# Diabetes philosophy



## DeusXM (Apr 9, 2014)

Ok, this isn't quite as high-brow as the title suggests!

I'm also coming at this from a position of limited knowledge so I'm hoping people will treat this in the spirit of discussion and correcting misconceptions helpfully.

From my extensive experience of how doctors deal with T1 and my very limited second-hand knowledge of how doctors deal with T2, I think that the approach used to dealing with T2 is doing those with the condition a massive disservice.

As a T1, I've always been made to feel:

*Complications are going to be very deadly so they need to be avoided
*Whether or not I avoid them is down to me, not anyone else
*Managing T1 is a process of constantly tweaking and adjusting medication, diet and exercise 
*T1 needs you to constantly collate information to allow you make those tweak and adjustments

Reading between the lines from T2s here and elsewhere, I get the impression that T2s are made to feel:

*That the fact they have diabetes is their own fault
*Complications are going to be problematic so they need to be avoided
*T2 is a 'wait-and-see' condition - the doctor takes control and gives you tablets, and you basically cross your fingers and hope for the best
*It doesn't really matter what you do to manage your diabetes, it's largely out of your control
*If your first lot of tablets doesn't work, then it means your diabetes is getting worse so you need more tablets
*If you're really bad, then you'll have to go on insulin

Is that about right? I know it won't be the case for everyone but it's the vibe I've certainly got.

If that IS the case...I think the approach to T2 is a self-fulfilling prophecy. As I said, as a T1, I've always felt that it's all on me, I need to constantly make adjustments, I need to be proactive and adapt. Whereas the philosophy behind T2 just seems to be set up to develop an acquired helplessness and create a treatment regime that seems to be the equivalent of just adding more gaffer tape to a leaky pipe rather than trying to either tackle the flow of water or consider replacing the pipe.

Is it time for a complete rethink about how those involved in healthcare approach T2? Should the professionals who specialise in T1 be brought in to help spread some of the more proactive attitude into the professionals who provide advice on T2?


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## Charliewatch (Apr 9, 2014)

Great post and a real thought provoker thanks for going to the trouble.


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## pippaandben (Apr 9, 2014)

In my personal experience you have hit the nail on the head perfectly. Although I was told at my very first meeting when diagnosed that it was not my fault - that was only lip service as all the actions afterwards belied the words. The attitude only changed after I went through all medications to the max within a year and still had readings in the high 20s-low30s. Then they panicked and I was put on insulin in a week - whilst I provided 6 readings a day by phone to the surgery - which did not go down very well with the receptionists taking the call!!! However still had to fight  my corner for the next 6 months to change from a mix to basal/bolus. Even then I had to tell the nurse what I thought the amounts should be based on my weight and activity level. So thankful I found this forum quite early. Was also lucky enough to be referred to a diabetes dietician who actually ran the Desmond course which I had been on - but she also ran the Expert course so had 3 x 1hr sessions with her which basically encapsulated everything on that course - plus her private phone number for any further help. I don't think diet entered into it except for accidently!!


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## Northerner (Apr 9, 2014)

DeusXM, that's pretty much my impressions also. This misconception that Type 2 is a 'lifestyle disease' - or worse, a 'lifestyle choice' is one that is firmly believed by many HCPs who don't have the training or inclination to recognise that diabetes is a spectrum not just one or two clearly definable types, so I suspect that in many cases the attitude is 'you got yourself into this mess, now you have to suffer the consequences'. So many seem to ignore the fact that there are tools and methods available that can really help T2s gain good control, minimise medication, and significantly reduce the risk of complications 

I think the main problem is that, due to the overwhelming prevalence of T2, they are always going to be treated by generalists - I doubt there is sufficient expertise from the 'T1 world' available to provide support for the HCPs in primary care. Having said that, it's not rocket science - provide education and tools (strips) to the patients and support them until they understand and can manage things well on their own, treating patients as individuals instead of following some sort of standard script of meds, more meds, complications etc.

There will always be people who ignore their doctor's advice, even if it is good advice. What worries me is the number of stories we hear here of people actively trying to gain control and receiving nothing but knockbacks, ignorance and dreadful advice  Diabetes affects a significant proportion of the population, and costs the NHS a huge part of its budget, it should be prioritised in GP training - there should be no excuse for a GP telling their patient to eat lots of starchy carbs and it is inevitable that they will end up on insulin because it's progressive and out of their control.


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## Sally71 (Apr 9, 2014)

I think that sounds about right.  My neighbour's mum is T2, in conversation one day I asked if she did her own blood tests and was told no, she just has the 3-month one which is good.  I don't want to fall out with my neighbour, and her mum has had the D for a lot longer than my daughter has so I didn't launch into a lecture about how can she know what's going on if she doesn't test etc... But I think that might be a case in point!  I also find it quite shocking how many T2s are told that their HbA1cs are too high but then aren't prescribed test strips... Ummm how are they supposed to improve their numbers then if they don't know what's going on?  And that's just the ones who have found this forum and realise that they need to make some effort themselves, how many others must there be out there who just carry on thinking that the doctor must know what he's talking about and never question it?

Whereas we have a fab hospital team, they have always taken as much time as we needed to help us to understand everything, DSN is always contactsble on email if we have a problem in between appointments (they also have pager service if it's more urgent). Now I can do all the pump adjustments by myself we just have a big discussion at the 3-monthly check ups, if we're having a problem then they will help me to sort it out; if not we just talk about how things have been and they usually agree that the changes I'm making are sensible.  If they suggest a change that I'm not happy with they will usually go with what I think (after all I'm the one that has to deal with it every day).

I also get the impression that there are many people out there who haven't been taught about carbs properly, I.e. it's obvious that they need to avoid sugar but some people don't seem to realise that bread/potatoes/rice/pasta/cereals etc also contain carbs and make a big difference.  When my daughter was dx we had only about half an hour with a dietician, she basically had a big pile of plastic toy food and we had to sort it into piles, one of all foods that we thought did contain carbs and another that didn't.  A fairly simple exercise but it was a good starting point for carb counting and would surely be useful to help T2s to know what they can eat freely and what they have to be careful with.  Maybe just small steps like this would be a big help to some people.


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## Andy HB (Apr 9, 2014)

My healthcare was pretty spot on I think.

1) Went direct to hospital when diagnosed and whilst there a DSN gave me a meter plus instructions on how to use it and BG ranges to target before and 2hrs after meals.
2) Attended a Diabetes Xpert course within a month of diagnosis at the same hospital.
3) Attended a clinic for around 3 months whilst they sorted my fatty liver out .... well, I sorted my fatty liver out by changing my lifestyle (sorry to use that term, but that is precisely what I did!).
4) I had regular HbA1c checks (every 6 months initially and now just once a year).
5) I had regular retinopathy checks once a year.
6) The GPs have been supportive so far (on my third one now .... but haven't seen the latest one yet .... haven't needed to!).

I guess the only thing lacking is foot checks, but frankly I don't think that I need them and can check them myself quite happily for now (so it's really my fault for not having them done).

Anyway, the result of all that is that I don't darken the door of my GPs surgery very much now and don't take any pills!

It's a pity that everyone can't have a similar experience. 

Andy


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## HERE TINTIN (Apr 9, 2014)

Andy HB said:


> My healthcare was pretty spot on I think.
> 
> 1) Went direct to hospital when diagnosed and whilst there a DSN gave me a meter plus instructions on how to use it and BG ranges to target before and 2hrs after meals.
> 2) Attended a Diabetes Xpert course within a month of diagnosis at the same hospital.
> ...



Why is treatment so diverse for type 2's. How come you were treated exactly as you should be as a type 2 and yet other hcp's do not seem capable of it. Is it all down to funding at the end of the day or lack of knowledge ?My GP'S surgery has one GP who is the diabetes expert and other GP'S there have there own specialities as well as general medicine. The dr who does the diabetic care runs a clinic every month and there is a DSN as well. Now I do not know how they deal with T2's as I am a T1 but I would have hoped they do a good job. If they don't it will be cutting back and not lack of experience.


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## Sally71 (Apr 9, 2014)

HERE TINTIN said:


> Why is treatment so diverse for type 2's. How come you were treated exactly as you should be as a type 2 and yet other hcp's do not seem capable of it. Is it all down to funding at the end of the day or lack of knowledge ?My GP'S surgery has one GP who is the diabetes expert and other GP'S there have there own specialities as well as general medicine. The dr who does the diabetic care runs a clinic every month and there is a DSN as well. Now I do not know how they deal with T2's as I am a T1 but I would have hoped they do a good job. If they don't it will be cutting back and not lack of experience.



I think part of the trouble is that diabetes is a specialist subject, and there aren't enough specialists. It probably all comes down to money.  And given all the other things that can go wrong with the human body, they can't have specialists in all conditions at all surgeries.  You would have thought though that people could be referred if their local surgery didn't have anyone with enough knowledge; maybe there aren't enough people around who realise how complicated it is and that you NEED a specialist...

And I also get the distinct impression with the NHS that they pull out all the stops for children, but the older you get the less time they have for you


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## Andy HB (Apr 9, 2014)

Sally71 said:


> And I also get the distinct impression with the NHS that they pull out all the stops for children, but the older you get the less time they have for you



Yep, I'm a young whipper-snapper at 50!


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## AlisonM (Apr 9, 2014)

At Dx, I was given a meter and strips an sat down with the GP to go through what I should be doing to manage the condition, he told me he thought I might be 1.5 rather than 2 and they'd need to test for that if the meds didn't work. There was talk of a course that would help with diet and exercise. Then I decided to come home and everything changed:

"You don't need strips, you'll only get obsessed, it's not healthy for T2s to test and a waste of money."

"The pills are still making you sick, well stick with it till the HbA and then we'll see."

"You're not doing very well are you? Are you even trying? We expected your blood results would come down far more than this, you need to try harder"

"Ah, well now. It seems you were right, according to these results you don't have Type 2, you've got this slow onset Type 1 thing, not that I really believe in it you know, but I'll send you up to the clinic, they can deal with you."

The clinic don't really 'believe' in LADA either, but at least the treatment they have me on is working and I don't have to deal with Dr Idiot any more. The other stuff has been handled pretty well and I get most of the check ups each year, bloods and toe tickling are done at the surgery, results and the rest of it at the Clinic.

No courses have ever been offered and when I asked I was told they don't do them here. Fortunately, I found this place very early on and have learned what I need to know from all of you.


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## Sally71 (Apr 9, 2014)

Andy HB said:


> Yep, I'm a young whipper-snapper at 50!



 sorry Andy, you are obviously one of the lucky ones who has had good care.

I was thinking of all the horror stories you hear of elderly people being shunted from pillar to post and not really cared for very well, but I can find hardly anything at all to complain about with my daughter's care both with D and when she had to have her appendix out last year.

Also it get the impression that many T2s (adults) don't get anywhere near as much contact with consultants and DSNs as we do (especially the useful kind of contact).  I know that's a bit of a sweeping statement though and that it doesn't apply to everyone, please correct me if I'm wrong!


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## Northerner (Apr 9, 2014)

Sally71 said:


> sorry Andy, you are obviously one of the lucky ones who has had good care.
> 
> I was thinking of all the horror stories you hear of elderly people being shunted from pillar to post and not really cared for very well, but I can find hardly anything at all to complain about with my daughter's care both with D and when she had to have her appendix out last year.
> 
> Also it get the impression that many T2s (adults) don't get anywhere near as much contact with consultants and DSNs as we do (especially the useful kind of contact).  I know that's a bit of a sweeping statement though and that it doesn't apply to everyone, please correct me if I'm wrong!



My Auntie (78) was diagnosed T2 about 18 months ago via a note slipped into a letter relating to other things that had nothing to do with it. There was also a sheet detailing a horrific carb-laden diet that she should follow. When I saw her last month she said she had never been contacted about it again - no tests, no follow-up, nothing


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## Sally71 (Apr 9, 2014)

Northerner said:


> My Auntie (78) was diagnosed T2 about 18 months ago via a note slipped into a letter relating to other things that had nothing to do with it. There was also a sheet detailing a horrific carb-laden diet that she should follow. When I saw her last month she said she had never been contacted about it again - no tests, no follow-up, nothing



 Northerner that is terrible!!!!

Clearly there is also a problem of education, as in the doctors themselves need to realise that D IS a serious condition that needs to be closely managed, but that if you can be bothered to be put the effort in then complications are not inevitable.  Maybe then they will start to give better advice to the patients!

How can this be done though, money would definitely come into it then...

Maybe we should offer our services to explain a few simple details!


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## Copepod (Apr 9, 2014)

It's not just information about diabetes that is lacking in some places. Recently I went to a talk by a scientist, who had his arm in a sling, which he kept touching, so I guessed it was uncomfortable, and could see lower arm was pointing downwards. So, in the interval I went to offer to adjust it, to make it more comfortable. He said the fracture clinic hadn't explained how to wear the Velcro fixed sling. I adjusted it so lower arm would be parallel with floor. He hardly touched arm in second half, so it appears to have helped.


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## Lurch (Apr 9, 2014)

It is negligence.  T2s suffer as a result of the utter unwillingness of many professionals to admit that the official food pyramid is scientifically untenable.  After all, how can you get T2 diabetes just by eating a lot of starchy carbs when we pros advise you to make this the lion's share of your diet?  It must be your fault.  Now you have T2, go on eating plenty of carbs.

It is insane.   It was known over a hundred years ago that blood sugar levels increase from carb intake.  Quite simple really.  Once the pancreas can't cope and the liver fattens etc, other factors combine to create a no-win cycle of increasing weight, higher insulin resistence etc.  

Reduce carbs and blood sugars come down to safer levels.  Not even limited to T2. Dr Bernstein's famous book proves this.

Carbs, carbs, carbs, carbs, carbs. 

It is scientific nonsense.  The low fat hypothesis (based on a never once scientifically supported theory that high fat causes CVD) has prevented any sane discussion of better dietary control of preventing or managing T2.  T2s are told not to bother testing and just take more meds.

It is a scandal.  My recent surprise at the spike from a small portion of porridge oats brought to mind the programme about the rugby player who lost a limb and died seven years after T2 diagnosis.  He was shown making porridge every morning.  No mention of whether he had ever been advised to test the effect of that food or of any food. 

It is digusting. 

But it ain't gonna change because there's a tad at stake admitting your professional advice may have caused a diabetes epidemic.

You might hope that somebody from the NHS or NICE occasionally might read these forums.


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## bev (Apr 9, 2014)

I agree with most of what has been said - but would add that there can be reluctance on the part of the person with Type 2 to actually be pro-active

A family member was diagnosed over a year ago and despite me (gently) offering advice and information about the importance of testing/cutting down on carbs/at least asking what your HBA1C is - no action has been taken - its easier to sit back and eat the carbs without exercise and make no change to lifestyle whatsoever...it is very sad but I think it wont be long before this person is showing complications as he still eats very high carbs with lashings of sitting on the sofa all day every day! That isnt anyone else's fault but his own in my opinion. Yes its probably denial and burying his head in the sand and being only too happy to ignore any results - but we all know that he is facing some serious health implications and possibly worse if he doesnt take responsibility for his condition. He would only have to visit a forum to find out what he is facing - but he wont....so whilst I agree that there is a lot of mis-information being given out by the NHS to type 2's - they cant be held responsible for people who dont want advice or who are willing to make any changes at all. I repeatedly tell him what carbs do to levels but he doesnt seem to care or at least he is happy being left alone to eat what he wants!

I would also add that not all childrens Type 1 teams are good. I have heard many dreadful stories of 'care' being given to children - but there are also great teams like ours - and do recognise that those with type 2 are already on  the 'this is your own fault' rollercoaster that seems to prevail in the NHS and feel terribly sorry for those who take the advice about eating carbs without testing - only to find out down the line that they are doing the worst thing possible and contributing to future complicationsBev


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## markaj (Apr 9, 2014)

My diagnosis went like this, the doctor said you are slightly diabetic, and there are 3 stages mildly like you  moderate, and heavily, i said should i test my blood he replied no type 2s dont need to test its against the health authority guidelines, all you need to do is take these tablets dont worry and you will be ok.
Needless to say i didnt take his advice i found this forum started low carb med fat and protein changed practice and dropped my hba1c form 10.4 to 6.5 in 6 weeks, i am due a hba1c this month and my 90 day bg is 5.6. Thank goodness for these forums,
One final point i work as an electrician and come into contact with alot of diabetics and i can honestly say none of them have ever been told about low carb and when i inquire about there hba1c reading they say as long as they are around 10 then their diabetic nurse and gp are happy, i do try and point them to this website but they are so blinkered by what they have been told by so called professionals they think i must be making it up.

mark


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## happydog (Apr 9, 2014)

I did not get any helpful advice on diagnosis.  I did get a lot of pessimism and a good telling off for refusing to co-operate and take the tablets.  I was told by the senior partner in the practice that complications of some kind appear in 70% of type 2 diabetics, lifespan is about 15 years, there is a serious danger of a heart attack or stroke and carbohydrates are the building blocks of life and must form a minimum of 65% of daily food intake.  I have had to fight for 25 strips per month, have been classified as obsessional and have actually read "non-compliant" on my notes on the computer screen.  I have learnt that this forum is a mine of information.  I have also been told that my current reduction in HbA1c will be transient and that I will end up on insulin within about two years.  I had to smile when they asked me if I was depressed.  I think I would have been if I had not found this forum! I hate going to see either the doctor or the DN because they are always so negative.  
I think things could be very different with correct advice on diet, allowing type 2s to test  and a more positive approach.  It would not cost a lot of money and would probably save in the long run.


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## Redkite (Apr 9, 2014)

Sally71 said:


> And I also get the distinct impression with the NHS that they pull out all the stops for children,



I can't agree with this I'm afraid!  Some paed clinic teams are great, some are awful - our old team were an absolute shambles, and I had to self-teach virtually everything I know about type 1!  And the fact remains that only 16% of type 1 children in the UK achieve an Hba1c less than 7.5% - this is appalling 

My Mum was diagnosed with type 2 over 10 years ago, was told to lose weight, cut down on sugary foods, eat more "slow-release" carbs like oats and bananas, and to present herself at the GP clinic twice a year for an Hba1c test.  She refuses to test because she had been told she doesn't need to.  Her target is 6.5% and below - mostly she has achieved this.  She has also been told (AND, might I add, read it in Balance mag) that diabetes is a "progressive" condition, and that she will inevitably need medications eventually, and finally insulin.  Earlier this year, my uncle on my Dad's side (also type 2, and on insulin) died suddenly aged 73 of a massive heart attack.  This was a huge shock, as his parents had both lived into their 90's.  I told Mum that diabetes increased the risk of cardiovascular disease, and she'd had no idea!  Given that she is also 73, I really hope she has taken note 

It irks me that instead of investing in good patient education and enabling people to manage their health themselves, doctors prefer to fob people off with vague recommendations about their diet.  Surely treating complications further down the line is much more costly....


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## stephknits (Apr 9, 2014)

It is really interesting to read how diverse type 2 medical advise has been.  Speaking for myself I have been surprised that I have not seen my doctor since diagnosis and that no one has been interested in discovering why I have type 2 as I have none of the risk factors etc.  I have just been put on metformin and told to eat a balanced diet (including carbs with each meal etc). 
I have a friend who is a cancer consultant and he thought further investigation was worth perusing.  He looked up a local diabetic nurse who specialises in genetic forms of diabetes.  She has been great and has looked into my case for me.  She has spoken to a consultant in Exeter and they want to test me for HNF1B which is apparently a rare form which is consistent with congenital kidney abnormalities, which I have.  She is writing to my gp to ask for the test,which costs £400 as it looks at my DNA.  We shall see what the doctor says.  
The diabetic specialist nurse says it will e worth it, as it would change the way my diabetes is managed, which would be great for me long term.  
I agree with posts that we tend to e offered a very generalised way of managing our diabetes.  I am not sure the Metformin is really the drug for me, as I understand it aids weight loss, and as I am now 7 stone 13 and getting lower, I really don't want to lose any more!  
I will post if anything develops as I hope this story might help others get the diagnosis they need.


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## Northerner (Apr 10, 2014)

stephknits, it sounds like you are being tested for something known as MODY (Maturity Onset Diabetes in the Young). We do have other members with this type of diabetes, although it is quite rare, and most GPs have probably never heard of it. The people in Exeter are the experts - it's great that you have been recommended to get tested. Hopefully, it will lead to you getting better and more appropriate treatment 

You might be interested in reading the following thread about MODY:

http://diabetessupport.co.uk/boards/showthread.php?t=3684


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## Bloden (Apr 10, 2014)

I agree with Redkite - spend money on patients BEFORE they get complications, and avoid the big costs the NHS are complaining about (and people's suffering, which is the most important thing).

Btw, how do you just quote a snippet, not the whole message?


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## Northerner (Apr 10, 2014)

Bloden said:


> ...Btw, how do you just quote a snippet, not the whole message?



You quote it as normal, then delete the bits you don't want included


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## stephknits (Apr 10, 2014)

Northerner said:


> stephknits, it sounds like you are being tested for something known as MODY (Maturity Onset Diabetes in the Young). We do have other members with this type of diabetes, although it is quite rare, and most GPs have probably never heard of it. The people in Exeter are the experts - it's great that you have been recommended to get tested. Hopefully, it will lead to you getting better and more appropriate treatment
> 
> You might be interested in reading the following thread about MODY:
> 
> http://diabetessupport.co.uk/boards/showthread.php?t=3684



Thanks Northerner, very useful thread!  As I am adopted, there is no looking into my family history, so I am keeping things crossed in the hope having the test.

As a more general comment for this thread.  It was interesting that when my consultant friend spoke to me, his wife was there and she is a gp.  She said that she would have never looked to question the type 2 diagnosis and hadn't heard of MODY, so fits in with a lot of posts here.  many doctors and nurses in general practice don't have the training/resources.  It just goes to emphasise how important forums like this are and how proactive we all need to be


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## Andy HB (Apr 10, 2014)

I think that I agree with what Bev said earlier.

I think a lot of problems would be avoided if patients took more control of their treatment. I don't mean telling the medical guys what to do, more understanding what the treatments are and making sure that they get what they're due.

That's where forums like this are so important because it makes people aware of what they should be expecting.

And that's why I think this forum in particular is so good because the advice given here is usually of a very high quality. It also doesn't push one idea or another but provides are more balanced approach (thanks to the input of the moderators as well, I hasten to add!).

Andy


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## Bloden (Apr 10, 2014)

Northerner said:


> You quote it as normal, then delete the bits you don't want included



OoOooOoooh! Thought it would be more complicated! Like the piggy btw.


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## DeusXM (Apr 10, 2014)

> A family member was diagnosed over a year ago and despite me (gently) offering advice and information about the importance of testing/cutting down on carbs/at least asking what your HBA1C is - no action has been taken - its easier to sit back and eat the carbs without exercise and make no change to lifestyle whatsoever



I think that's actually a great example of the point I'm trying to make. I'm guessing because of the way the initial doctor presented the diagnosis of T2 (ie. it's a thing you have to put up with, take these pills and cross your fingers), it simply doesn't cross the mind of your family member to be proactive. They've never been told by someone in medical authority that this is a condition that they can fight, or that they can take steps to make their life better.

Sadly, it doesn't matter what you say, despite your obvious knowledge, because you can be 'safely' written off by them as either not a doctor or knowing about the 'wrong' type. 

My gut feeling was if T2 was interpreted as a condition where you CAN take more action than just simply turning up expecting the doctor fix it all, at the very point of diagnosis, you would see fewer T2s lapse into denial. If people don't even realise there's an 'easy' way out, they might just put in the hard work. 

That's why I think the philosophy behind T2 treatment is doing T2s a massive disservice and it's why we're seeing so many complication predictions for the future. It's not just about education; it's about mindset.


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## Hanmillmum (Apr 10, 2014)

Andy HB said:


> I think that I agree with what Bev said earlier.
> 
> I think a lot of problems would be avoided if patients took more control of their treatment.
> 
> Andy



Often though if people are told on dx that their "diabetes is mild" or "just come back to clinic in X months and we'll see how you are doing" or "just take these tablets for now" they are getting permission to be dismissive also IMO. That first appointment at dx should be the crucial point of information giving, esp in generations that "do as doc says". If people don't realise from *authority* they can do a lot themselves to improve their health and outcomes they may well not bother to investigate.


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## Hanmillmum (Apr 10, 2014)

DeusXM said:


> I think that's actually a great example of the point I'm trying to make. I'm guessing because of the way the initial doctor presented the diagnosis of T2 (ie. it's a thing you have to put up with, take these pills and cross your fingers), it simply doesn't cross the mind of your family member to be proactive. They've never been told by someone in medical authority that this is a condition that they can fight, or that they can take steps to make their life better.
> 
> Sadly, it doesn't matter what you say, despite your obvious knowledge, because you can be 'safely' written off by them as either not a doctor or knowing about the 'wrong' type.
> 
> ...



Yep, that was more or less what I was trying to say too


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## Andy HB (Apr 10, 2014)

Hanmillmum said:


> Often though if people are told on dx that their "diabetes is mild" or "just come back to clinic in X months and we'll see how you are doing" or "just take these tablets for now" they are getting permission to be dismissive also IMO. That first appointment at dx should be the crucial point of information giving, esp in generations that "do as doc says". If people don't realise from *authority* they can do a lot themselves to improve their health and outcomes they may well not bother to investigate.



Sadly, I think you are correct.

But, hopefully with the 'internet generation', people will be more likely to get more informed now.

Of course, there is always the problem that some people will not be able to filter out the rubbish which also exists on the internet!

Andy


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## Northerner (Apr 10, 2014)

Andy HB said:


> Sadly, I think you are correct.
> 
> But, hopefully with the 'internet generation', people will be more likely to get more informed now.
> 
> ...



I think there is another problem there though. Whilst there are a lot of people of middle-age or older who actively use the internet, there are an awful lot who don't. Possibly a lot of them use it to do certain things, like checking internet banking or reading news sites (like my 86yo Dad), but they don't actually engage with it. Since T2 predominately affects those in this age group, the direction needs to come from the HCP, at least initially, perhaps by getting them signed up to reputable forums )) and showing them how to use it to get peer support and unearth information.


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## Hanmillmum (Apr 10, 2014)

Northerner said:


> I think there is another problem there though. Whilst there are a lot of people of middle-age or older who actively use the internet, there are an awful lot who don't. Possibly a lot of them use it to do certain things, like checking internet banking or reading news sites (like my 86yo Dad), but they don't actually engage with it. Since T2 predominately affects those in this age group, the direction needs to come from the HCP, at least initially, perhaps by getting them signed up to reputable forums )) and showing them how to use it to get peer support and unearth information.



Also, there may be the same problem with HCP's not in the *mindset* of recommending a patient to engage with an internet forum or look online for appropriate treatment advice and education. Some HCP's role their eyes at the suggestion that you have looked something up online prior to your appointment!


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## Andy HB (Apr 10, 2014)

My hope is that patients will start to bypass these 'roadblocks'.

As Northerner says, there are still large numbers of people who don't access the internet. But this will change ..... possibly!

Andy


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## AlisonM (Apr 10, 2014)

I certainly got that reaction the first time I mentioned looking up stuff online, and they really don't take kindly to any mention of this place. I've taken to saying we're hosted by DUK as well, just to upset them a bit more.  We're not meant to think for ourselves, just accept the word of Dog as handed down by 'them'. The fact that it's killing us is of little importance.

Having said that they no longer lecture me as whatever I'm doing is working so they can't really argue with it.


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## bev (Apr 10, 2014)

DeusXM said:


> I think that's actually a great example of the point I'm trying to make. I'm guessing because of the way the initial doctor presented the diagnosis of T2 (ie. it's a thing you have to put up with, take these pills and cross your fingers), it simply doesn't cross the mind of your family member to be proactive. They've never been told by someone in medical authority that this is a condition that they can fight, or that they can take steps to make their life better.
> 
> Sadly, it doesn't matter what you say, despite your obvious knowledge, because you can be 'safely' written off by them as either not a doctor or knowing about the 'wrong' type.
> 
> ...



To a certain extent I agree - but not for this particular family member as he was told on diagnosis that unless he lose's weight and starts to exercise then he is looking at complications. He decided in his wisdom that what he doesnt know wont hurt him and 'chooses' to abuse his body even though he knows and understands what eating too many carbs is doing - that isnt the fault of anyone else other than him in my view. He was offered a place on the DAFNE course - but refused to go because he 'didnt have 2 hours per week to waste on this sort of nonsense' ! He doesnt work and sits on his computer all day - but doesnt bother to do any research about his health.

I was the first person he rang as he said I would understand and possibly help/advise - sadly he has taken no advice and continues on his path of self-destruction Also decided to keep smoking!

I feel strongly that although some people on diagnosis are given useless advice - there is a whole world out there for them to get the correct information and be pro-active if they choose to. When Alex was diagnosed our local hospital were useless - told us once that if we didnt like to see high numbers then we should stop testing! We were only testing 4 times a day then! He was growing at the time and I didnt know growth hormones affected levels - did my own research and left that team to go to our present team who are fantastic. 

Yes I agree - the NHS need to update their dreadful advice to Type 2's - but the buck doesnt stop there - people need to take responsibility for their own health at some stage - anyone can access the internet or local support groups/libraries if they choose toBev


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## Redkite (Apr 10, 2014)

Some people will carry on regardless even if they HAVE been told all the facts and offered proper support and education, BUT there are plenty of others like my Mum who would have taken all sorts of steps if the doctor had told them to, but won't do anything on the advice of a relative or an online forum if the doctor has said they don't need to bother (e.g. testing, carb counting).  I do find that frustrating!


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## bev (Apr 10, 2014)

Redkite said:


> Some people will carry on regardless even if they HAVE been told all the facts and offered proper support and education, BUT there are plenty of others like my Mum who would have taken all sorts of steps if the doctor had told them to, but won't do anything on the advice of a relative or an online forum if the doctor has said they don't need to bother (e.g. testing, carb counting).  I do find that frustrating!



Hi Redkite,

Yes I can see why your frustrated with this!The sad thing is that those people who might actually make the necessary changes just arent being told and those that are choose not to take the adviceBev


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## Northerner (Apr 10, 2014)

bev said:


> Hi Redkite,
> 
> Yes I can see why your frustrated with this!The sad thing is that those people who might actually make the necessary changes just arent being told and those that are choose not to take the adviceBev



What is worse in my book are the people who are trying very hard to help themselves and constantly getting knocked back


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## Maryanne29 (Apr 11, 2014)

I work with disabled people and we have a high proportion of T2s. This is mostly because parents let them eat whatever they want, they either don't or can't get enough exercise resulting in a lot of very over weight unhealthy people. Parents will say all the cakes, sweets etc make them happy. Some give them what they want to avoid challenging behaviour. But they seem to think T2 won't happen to their adult children. All the health promotion we do is ignored by families. What can we do!?


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## Copepod (Apr 11, 2014)

Following on from Maryanne's point:

It's also true that a high % of people with long term mental health issues are overweight, less physically active than they should be, and suffer physical health problems from being overweight. 

While food intake is an important factor in weight control, so is physical exercise. When I worked at a country park, I set up a health walk. We expected that the majority of walkers would be people in their 50s or older, who had been advised to increase their physical activity levels, and many of this group did come along. However, about 50% of walkers came from mental health services. Initially with staff, but many continued to come along to weekly walks, still on Thursday mornings, 10 years since starting. At request of walkers, I ran a series of orienteering sessions in Easter and summer periods, when access to school sports facilities was prevented. Many also asked to come along for conservation work. One young man with Downs syndrome comes one day a week. What I'm saying is that thingvs other than food can be a reward. Although the tea, coffee and biscuits after the walk are popular, along with 3 health walks barbeques a year.


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## happydog (Apr 11, 2014)

Unfortunately the DN and doctor that I see have actively discouraged me from following a low carb diet and testing.  Both have warned me that I am putting my health at risk by doing this and have said that D&E are only effective for a very short period of time during which damage is being done to the organs in the body.  My family tended to agree as they thought that they are professionals who must know what is best.  It has taken quite a lot of determination to stick to what I have found out here.  They dismissed the internet and this forum as a waste of time with the advice from lay people who don't have the necessary knowledge.  Both the doctor and the DN have been on "specialist" courses.  IMHO T2 diabetes is something that an individual can do a lot about, but they need to have the knowledge, resources and as has been said the mind set.  Sadly there will always be some who opt not to try for a variety of reasons.  The fact that you must take charge of your condition and do something about it is the main message for me and should be the one given to T2's at diagnosis.  It is the easy way out to say take these tablets.


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## Northerner (Apr 11, 2014)

happydog said:


> ...They dismissed the internet and this forum as a waste of time with the advice from lay people who don't have the necessary knowledge.  Both the doctor and the DN have been on "specialist" courses.  ...



This is just plain ignorance, bordering on arrogance. Over the past 5 years I have seen countless people turn their lives around due to the help and support they have received here from experienced and knowledgeable people who have achieved similar success in the past and want to pass that knowledge on. Here are thousands of 'case studies' who are living proof that what they are saying is unnecessarily pessimistic, if not plain wrong. Unless Type 2 themselves, these HCPs do not experience diabetes in all its diversity 24/7/365, the members here do.

The people who seek out forums  such as ours are generally highly-motivated people who are perfectly capable of distinguishing good advice from the crackpot, and good moderation ensures that a balanced and broad-ranging view is represented. I would imagine that, if this is the kind of advice and treatment they are giving out to their patients then yes, the majority of them will fulfill their predictions, so in turn this will reinforce their attitude that what they are saying is true. As you and thousands of others have proved though, it is simplistic and will sadly compromise the quality of life of those who follow such 'professional' advice


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## Hebs (Apr 11, 2014)

So to tag onto this thread.....

I was diagnosed 4 yrs ago, aged 35, carrying extra padding (although this fluctuates!). Dad T2, brother recently diagnosed T2 aged 39.
Is it my 'lifestyle' or genetics?! Chicken or the egg ?

After been sharply told recently that I "don't need to test/have a kit" by the same GP who gave me the kit on diagnosis..... Then to be told by DSN that I am 'different' as have hypo-ed whilst on metformin.... Hence testing kit needed... 

And I hold my hands up to still not understanding the D word. (Partly because I bury my head in the sand)
As T2 I always leave any D related appointments at the GP feeling like I am 'making a fuss' or like its not as important as if I was on insulin - not my views but that's the impression I get from medical experts)

Does anyone else have a cycle of being very good with eating and then totally ignoring the rules ?


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## HERE TINTIN (Apr 11, 2014)

I sympathise with you, sticking to the "rules" can be very difficult all of the time, we or a lot of us ""fall off the wagon" so to speak every now and then. It sounds like you need a bit more D education and also maybe to be treated more seriously. Your GP is at fault , you shouldnt be made to feel you are making a fuss, D is a real disease/condition and until GP's take type 2's seriously how can you be expected to do the same. If I were you I would tell my GP I would like a refereal to a diabetic clinic based at a hospital, see a dr, a DSN and ask for proper information about your condition. Then maybe you will feel more in control and more able to take charge of your D. By the way as a type 1, my mum, and half sister all had type 1. If that can be hereditary I do not see why type 2 can't be.


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## Andy HB (Apr 11, 2014)

happydog said:


> Unfortunately the DN and doctor that I see have actively discouraged me from following a low carb diet and testing.  Both have warned me that I am putting my health at risk by doing this and have said that D&E are only effective for a very short period of time during which damage is being done to the organs in the body.  My family tended to agree as they thought that they are professionals who must know what is best.  It has taken quite a lot of determination to stick to what I have found out here.  They dismissed the internet and this forum as a waste of time with the advice from lay people who don't have the necessary knowledge.  Both the doctor and the DN have been on "specialist" courses.  IMHO T2 diabetes is something that an individual can do a lot about, but they need to have the knowledge, resources and as has been said the mind set.  Sadly there will always be some who opt not to try for a variety of reasons.  The fact that you must take charge of your condition and do something about it is the main message for me and should be the one given to T2's at diagnosis.  It is the easy way out to say take these tablets.



I'd like these so-called health professionals to define "short period". I have been diet/exercise controlled for getting on for four years now and just recently had my best ever HbA1c. (Granted, I am not on a particularly low-carb diet, mind).

As to people living with the condition and who have taken charge of their condition not having the necessary knowledge .... poppy-cock!!

However, we do have to make it plain when giving the benefit of our experience that it needs to be handled with care. We, at least, realise that this is not a 'one size fits all' condition.

Andy


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## Andy HB (Apr 11, 2014)

Hebs said:


> Is it my 'lifestyle' or genetics?!



I consider it is a combination of both. The genetic aspect pre-disposes people to the condition. Poor lifestyle then helps it to be manifested sooner or later (or never, for the lucky ones!).

It can also be manifested even if the person has a good lifestyle in which case the genetics may well have been the primary cause .... who knows?!

As to "the rules", I often fall off the wagon. But overall, I do pay attention to what I eat on a regular basis. Having got my weight down from over 19st to 14st, I really don't want to end up back in the bad times again. After all, I would not want to feel so ill again!!

Andy


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## Hebs (Apr 11, 2014)

Thanku Andy & HTT for the replies - very wise and probably right too! 
Onwards  
Well done on the amazing weight loss Andy! That's fabulous. 

Can I do that HTT? Ask for referral to the local hospital ? My friend sees the diabetic team there as she's on a pump and has always said how amazing they are there.


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## trophywench (Apr 11, 2014)

Hebs - I changed my hospital team in 2008.

It was a breath of fresh air!

The DSN there asked me a question.  She said, I don't know you - tell me, who treats your diabetes?

I started to say, naming them, my consultant and now  -you - oh and of course, Dr E my GP.

She then said Well if Dr E thinks HE  treats you diabetes, then he just better have another think!  No - none of us do - YOU treat  your diabetes, Jen ! and so does everybody diabetic because we're not with you 24/7 and we don't live your life.

I was actually gobsmacked.  It was the very first time since 1972, that anyone medical had handed ME ownership of MY diabetes!

I accepted that ownership and now I can discuss it with HCPs on a very much more equal footing - in fact, I have the upper hand and what I say has more importance - they can advise me, but they can no longer TELL me what to do.  So I can take advice from anywhere I damn well choose - because it's MINE !

I highly recommend everybody does this, it's very empowering !


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## Hebs (Apr 12, 2014)

She then said Well if Dr E thinks HE  treats you diabetes, then he just better have another think!  No - none of us do - YOU treat  your diabetes, Jen ! and so does everybody diabetic because we're not with you 24/7 and we don't live your life.

I was actually gobsmacked.  It was the very first time since 1972, that anyone medical had handed ME ownership of MY diabetes!


Thanks for this - I think it's so true - ownership. I think that's the blur for me. Plus the little bit of denial x


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## Pinktoes (Apr 22, 2014)

*Mine is Fab*

Everywhere is so different.  When I was diagnosed it was at the Dr's. and all my care was there (something new in our area) Diabetes is in our family, but to be diagnosed the year I was to be 50 was a shock. (I am not, or ever have been over weight, which seems to be a common misconception).  Care has been excellent, saw a dietician, see Dr. yearly and nurse when ever I need.  Tablets for first year, then onto insulin, the only thing is they now seem to be unsure if I am type 1 or 2, because of how it has progressed.  But I am proactive, manage it myself and always do lots of online research.  So I supose care should be national, not regional, and standard where ever you are, but it must be due to funding, as everything!


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## Northerner (Apr 22, 2014)

Pinktoes said:


> Everywhere is so different.  When I was diagnosed it was at the Dr's. and all my care was there (something new in our area) Diabetes is in our family, but to be diagnosed the year I was to be 50 was a shock. (I am not, or ever have been over weight, which seems to be a common misconception).  Care has been excellent, saw a dietician, see Dr. yearly and nurse when ever I need.  Tablets for first year, then onto insulin, the only thing is they now seem to be unsure if I am type 1 or 2, because of how it has progressed.  But I am proactive, manage it myself and always do lots of online research.  So I supose care should be national, not regional, and standard where ever you are, but it must be due to funding, as everything!



Hi Pinktoes, welcome to the forum  Your story mirrors many others, and it does seem likely from what you say that you are a slow-onset Type 1 (also known as Type 1.5 or LADA - Latent Autoimmune Diabetes in Adulthood). I was similar, diagnosed aged 49 the week before I was due to run a marathon, so hardly stereotypical! Although weight is a big risk factor for Type 2, something like 20% of Type 2s are at or below normal weight at diagnosis. It's good that you have received good treatment and care, many others in your situation have had to endure months or years in inadequate or inappropriate treatment because their teams do not realise that it's not just children that get diagnosed with Type 1.


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## Jimbo (Apr 26, 2014)

In the five years since DX, with regular visits to my Doctor, DSN and the Podiatrist, I would have gotten nowhere without the information that this wonderful forum has provided. 
I have learned that good control means a healthy, extended life and I have tried my best to maintain it. I have fallen off the wagon a few times, succumbed to abject denial, but, with the help and information given on here I have climbed back on and done my best to keep my numbers in the mid 6's to low 7's. I have never managed to get down to the high 4's, low 5's that you guys recommend but I keep trying because, I know that it is for my own benefit. My health team are delighted with the results I am maintaining but, and it is a big but, I now know that I need to try harder with the control because of the heart trouble side effects. It is seven years since I had an Angioplasty and a stent was inserted into one of my major heart arteries and now I need another, and quite possibly it may even be a by-pass that is required, I will find out when the Angiogram is performed. If, more of an emphasis had been made that more control could be taken by me personally, I would probably not be at this stage now. It would not be costing the NHS a small fortune for the operation because I would have taken a lot more care.
I have lost five stone since DX, gained two back whilst in denial and now lost another stone and a half since getting my act together again. However there has been a health cost and it's all down to the way that the health service treat and deal with type 2's. 
No test strips or testers being the biggest failing, treating us like children who have to be led by the hand and do as we are told by uneducated, patronizing, Doctors and Nurses. Who, sadly, quite often turn out to be the blind leading the blind. The lack of education of them and, of us, by them, is unforgivable and, totally unnecessary, god, how much money has been wasted?
I thank God that I found this forum. The help and advice has been in-valuable, it would take me all night to thank everyone individually so, I would just like to pass on my thanks en-mass. 
Thank you all!


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## Northerner (Apr 27, 2014)

Jimbo, I hope things go well with the angiogram


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## Jimbo (Apr 27, 2014)

Northerner said:


> Jimbo, I hope things go well with the angiogram



Thanks Alan, truth be told, I am bricking it.


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## paulsw (Apr 28, 2014)

This is my understanding of all of this; Type 1 is what is referred to as "JD", your pancreas doesn't make ANY insulin at all!  You have to control the Glycated hemoglobin in your blood system by applying injections of insulin depending upon the amount of carbs (food products) that you will eat.  Basil insult applications are done in the late evenings controlling possible "morning" issues (dawn phenomenon etc.) whereas Bolis insulin is "dialed in" depending upon the amount of carbs you are ABOUT to eat (15 minutes or so).  This is also known as "fast acting" insulin since it response also immediately to the quantity of carbs that you are about to eat.  That is why alcohol is a "no no" for Type 1 persons - alcohol stops the liver from releasing glucose (the liver has to deal with the alcohol first) thereby putting a Type 1 diabetic person at risk of going hypoglycemic (LOW blood sugars and a risk of going into a hypoglycemic coma).

Type 2 is not the same; we (I'm T2DM) have the SAME needs to control the "plasma glucose" levels that impact our glyated hemoglobin (hbA1c) because this will impact our long term ability to produce any kind of insulin.  The better that we (T2DM) reduce our "highs", the longer our pancreas will keep producing insulin (see the UKPDS).  But this isn't a given; our genetic make up will impact this as well; you can be the best you possibly can controlling your highs and lows but genetics will determine how badly things will go; we are ALL held hostage to our genetic make-up.  Diabetes is a "chronic, progressive illness" - we will ALL  ultimately get worst.  The speed at which we get worst depends upon genetics and how we deal with the disease.

None of us will die from "Diabetes" but, instead, from "complications of diabetes".  The comorbities of diabetes (nephropathy, neuropathy, retinopathy, CDV, CAD, PAD) will take us one by one.  The question is when; the better you handle your disease, the longer you will live, Type 1 or Type 2.

Diet and exercise is a major component of the solution.  Medication and how well we handle it is another control.  At the end of the day, it really boils down to how well you manage YOUR own health.  You, better than your Endo or your GP should know what your plasma glucose levels are and what you need to do to manage them - better or not.

Skinny people get T2DM too so it's not always your fault; genetics plays a BIG role in this too.

See http://community.diabetes.org/t5/Re...and-a-BIG-thanks-to-all-the/m-p/441863#M34699 for what I went through.


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## Bloden (Apr 28, 2014)

It's NEVER anyone's fault, sweetie!


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## Northerner (Apr 28, 2014)

Bloden said:


> It's NEVER anyone's fault, sweetie!



Agree! 



> Diabetes is a "chronic, progressive illness" - we will ALL ultimately get worst.



Disagree!


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## Copepod (Apr 28, 2014)

Welcome Paulw.

Interesting spelling (typical British understatement!)- long term insulin is usually called basal, not basil (although I have an old friend from university nordic skiing days called Basil  ) and meal time short acting insulin is usually called bolus, not bolis. Different short acting insulins have different action profiles, so can be injected anything from 30 mins before to just after eating, depending on situation. Eg in a restaurant, it can be risky injecting too early, before food arrives and you can see portion size and estimate carbohydrate content. When living in a student hostel, evening meals were served from a counter, so there was some queuing, and once there was a fire alarm, so eating was delayed. Hence, I didn't inject until I had the tray and plates of food in my hands.

While people with type 1 diabetes need to take care when drinking alcohol (and everyone should take care when drinking alcohol, of course), it's certainly not a no-no or impossible. I will be drinking a post run beer or cider after each day of Great Lakeland 3 Day mountain running race, for example - why would I miss out of free beer offered by race organisers?!?

Your point "the better you handle your disease, the longer you will live, Type 1 or Type 2" is good, even if people may argue about term disease / condition.


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## DeusXM (Apr 28, 2014)

There's quite a lot wrong in this post, unfortunately.



> Type 1 is what is referred to as "JD"



No it isn't. It's called Type 1 diabetes.



> Basil insult applications are done in the late evenings controlling possible "morning" issues (dawn phenomenon etc.)



No. Basal insulin is injected at the same time every day and is there to control the basal output of glucose from your liver and meet your basal metabolic needs for insulin.



> That is why alcohol is a "no no" for Type 1 persons - alcohol stops the liver from releasing glucose (the liver has to deal with the alcohol first) thereby putting a Type 1 diabetic person at risk of going hypoglycemic (LOW blood sugars and a risk of going into a hypoglycemic coma).



Not quite. You can still drink alcohol on T1 and achieve good blood sugars. Both your basal and bolus are adjustable - you simply adjust these according to your alcohol intake.



> you can be the best you possibly can controlling your highs and lows but genetics will determine how badly things will go; we are ALL held hostage to our genetic make-up. Diabetes is a "chronic, progressive illness" - we will ALL ultimately get worst. The speed at which we get worst depends upon genetics and how we deal with the disease.



There is no reason why a well-controlled T2 cannot maintain or even reverse the course of their disease. I am aware of plenty of T2s who have come off medication and manage through diet and exercise alone.



> None of us will die from "Diabetes" but, instead, from "complications of diabetes". The comorbities of diabetes (nephropathy, neuropathy, retinopathy, CDV, CAD, PAD) will take us one by one.



WRONG.

Keep your A1C in the normal range and there's no reason why you should suffer complications. If we are in agreement that it is the damage caused by elevated blood sugars that causes complications, then logically, prevent the elevated blood sugars, prevent the damage. That's the entire basis for my treatment motivation - keep my blood sugar levels as normal as possible and then I can enjoy the same kind of life as everyone else.


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## HelenM (Apr 28, 2014)

DeusXM said:


> There's quite a lot wrong in this post, unfortunately.............
> 
> WRONG.
> 
> Keep your A1C in the normal range and there's no reason why you should suffer complications. If we are in agreement that it is the damage caused by elevated blood sugars that causes complications, then logically, prevent the elevated blood sugars, prevent the damage. That's the entire basis for my treatment motivation - keep my blood sugar levels as normal as possible and then I can enjoy the same kind of life as everyone else.


Agreed, and hopefully that will be true for many of us but sadly some people do die from diabetes in the form of DKA and even more  from HHNS
http://www.diabetes.org/living-with-diabetes/complications/hyperosmolar-hyperglycemic.html


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## robert@fm (Apr 28, 2014)

I am slightly annoyed by a newbie spouting (yet again) the urban myth (albeit in a disguised form) that "obesity causes diabetes" (as someone else pointed out, he misspelled "not always", it should have been spelled "never"). The actual scientific view is "there is a link between T2 and obesity", but it doesn't specify the nature or direction of the link, so to inflate it to "obesity causes diabetes" is a prime example of the _cum hoc_ fallacy, especially given the known facts:


Obesity is associated mainly/exclusively with T2; T1s tend to be underweight. (I don't know about T1.5s.)
Not all T2s are obese, even at diagnosis.
Most obese people don't develop T2.

T1 can be caused by anything which causes the pancreas to fail, but the only way to get T2 is to have that genetic timebomb ticking inside you from birth. Your cells can't take up insulin effectively, or there isn't enough to go around, so the blood glucose level rises and the liver deals with this by converting the excess and storing it as fat. This continues for typically 30–40 years, until this coping strategy no longer works and the BG level rises high enough that a diagnosis can finally be made.

This is certainly how it worked for me (contrary to one of the crackpot ideas shouted at me by yobbos, I was obese long before I had any control over my food supply), so if any deduction can be made from the link, it is probably that "diabetes causes obesity".


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## Andy HB (Apr 28, 2014)

Bloden said:


> It's NEVER anyone's fault, sweetie!



I disagree, fundamentally and completely. 

It WAS my fault that my diabetes symptoms became apparent because I let myself get overweight. Whether that was caused by my excess insulin and insulin resistance or whether my lifestyle was poor, I don't care. It was within my ability to reduce my weight and correct the worst of the symptoms.

The fact that I have now done so and my symptoms have abated somewhat (so far) is testament to that fact.

So, in my view, there is at least one person in this world who was at fault! 

Andy 

p.s. But conversely, I don't agree with T2 bashing and finger-pointing. That has to stop. People need help and encouragement instead.


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## paulsw (Apr 28, 2014)

Copepod said:


> Welcome Paulw.
> 
> Interesting spelling (typical British understatement!)- long term insulin is usually called basal, not basil (although I have an old friend from university nordic skiing days called Basil  ) and meal time short acting insulin is usually called bolus, not bolis. Different short acting insulins have different action profiles, so can be injected anything from 30 mins before to just after eating, depending on situation. Eg in a restaurant, it can be risky injecting too early, before food arrives and you can see portion size and estimate carbohydrate content. When living in a student hostel, evening meals were served from a counter, so there was some queuing, and once there was a fire alarm, so eating was delayed. Hence, I didn't inject until I had the tray and plates of food in my hands.
> 
> ...


Thanks Copepod for the kind words; I have been lurking on your board for months and thought that a response regarding the philosophy of diabetes seemed like an appropriate subject to post to.  I will readily admit that I know very little about T1.  I was dx'd with T2DM almost a year ago and have been crazy, silly researching everything I could about the disease but have focused on T2 only (thus the UKPDS reference).  As my link indicates ( http://community.diabetes.org/t5/Re...and-a-BIG-thanks-to-all-the/m-p/441863#M34699 ) I took my hbA1c at dx from 12.4% to 6% in the span of 126 days - not an easy task.  I take this seriously!  I am very pleased to say that I have avoided "basal and/or bolus" (correct spelling?) insulin applications.  But even working as hard as I am on diet and exercise I don't think I'll ever avoid medications completely, I'm very sorry to say (I'm down to 500mgs of Metformin a day.  I'm finally off my ACE Inhibitor (Ramipril, for hypertension) and expect to hear (at my next blood test) that I won't need a Statin for cholesterol levels).  And I truly believe all the research that tells me that diabetes IS a "chronic, progressive illness" (not my words).  I would LOVE to believe otherwise but everything I've read tells me things are - at their own pace - going to get worst (my Endo says so too).  IF you disagree, research UKPDS!


Finally, while I expected that my response was going to get people's backs up (if you can't stand the heat then stay out of the kitchen), I certainly didn't expect the flames my response has received. To that end, I'd suggest that if you guys want to see more people contribute to the conversation you may want to ease up a bit.  Don't get me wrong, I have no problems being corrected as I will more than readily admit that I'm still uneducated at diabetes (T1, T1.5 or T2) but there's ways of being a bit more polite in teaching us newbies. Don't worry though, I didn't register on this site so that I'd avoid harsh responses - bring them on as in the end, I'm the one that will gain a better understanding of diabetes.

BTW, it's nice to hear that there's still a free beer or cider out there.  I thought those days were over...


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## Northerner (Apr 28, 2014)

paulsw said:


> Finally, while I expected that my response was going to get people's backs up (if you can't stand the heat then stay out of the kitchen), I certainly didn't expect the flames my response has received. To that end, I'd suggest that if you guys want to see more people contribute to the conversation you may want to ease up a bit.  Don't get me wrong, I have no problems being corrected as I will more than readily admit that I'm still uneducated at diabetes (T1, T1.5 or T2) but there's ways of being a bit more polite in teaching us newbies. Don't worry though, I didn't register on this site so that I'd avoid harsh responses - bring them on as in the end, I'm the one that will gain a better understanding of diabetes...



Paul, I wouldn't call the responses 'flames', they were simply disagreeing with your assertions. We do not encourage 'harsh' responses or 'heat' in this frum, but discussion and disagreement are fine, whilst respecting others' right to hold a different view. Diabetes is far more complex than Type 1 and 2, the more you learn, the more you will realise it is more of a spectrum, so it is not possible to make general assumptions, even when quoting the many studies that have been done, since they are often contradicted by others.


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## DeusXM (Apr 28, 2014)

The fact is, we still don't really know what causes either kind of diabetes.

While we know that T1 is directly caused by the immune system attacking beta cells, we don't know WHY they do that. There is evidence to suggest that T1 is probably genetic with an environmental trigger (such as an infection), particularly as gene sequences associated with T1 have been identified. There must obviously be some evidence as well of an infectious trigger, given that there is research going into developing a vaccine. Plus the fact that T1 manifests suddenly and abruptly suggests something specific has happened to wake up the immune system - all of which points to an infectious trigger.

As for T2, I would say the jury is well and truly out. There does seem to be a mild correlation in families but this doesn't take into account whether or not this is because of biology or shared family habits.

There is also a relationship between obesity and T2 but arguably it is extremely hard to define. One hallmark of some kinds of T2 is a high level of insulin resistance which leads to an overproduction of insulin. Those paying attention at the back will note that high levels of insulin cause high levels of fat storage, so there is a very compelling case to be made that obesity is a symptom, rather than a cause, of T2. But then flying against this is an acknowledgement that there are those who clear do overeat and are obese through lifestyle also do sometimes develop T2. 

My gut feeling is that T2 isn't a single type of diabetes at all - it's an umbrella term for a variety of things that all essentially boil down to not being able to produce and/or use insulin properly. Probably the best metaphor is rhinoviruses - there are loads of differing viruses that cause runny noses, coughing etc. which we all just lump together as 'a cold'. T2 could possibly be the same ie. lots of different causes, same end symptoms.

I would argue that under the circumstances, T1 is entirely unpreventable through lifestyle and that for T2, it may also be completely impossible but that it makes sense to live a healthy lifestyle - not to reduce your risk of T2 specifically, but to reduce your risk of anything. 

Regardless of the cause of our individual case of diabetes, the important thing to remember at all times is that it is our control of diabetes that should be focused on the most. There's no point worrying about how you got it - just focus on making sure it doesn't damage you.


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## paulsw (Apr 28, 2014)

Andy HB said:


> I disagree, fundamentally and completely.
> 
> It WAS my fault that my diabetes symptoms became apparent because I let myself get overweight. Whether that was caused by my excess insulin and insulin resistance or whether my lifestyle was poor, I don't care. It was within my ability to reduce my weight and correct the worst of the symptoms.
> 
> ...


I disagree; being over-weight is not a precursor to diabetes.  Everything I've read tells me that genetics plays a much bigger role.  And while I've managed in less than a year to lose about 100lbs (over 7 stones) I don't blame my diabetes on my former obesity.  It's way easier to blame my father (LOL)!

The truth is that my diabetes would have surfaced, being fat or otherwise.  I may have pushed things along a little faster but this was going to happen and I'll deal with it as best I can.


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## Andy HB (Apr 28, 2014)

Oh, by the way! Welcome to the forum paulsw. 

There are quite a few people on the forum with very strongly held beliefs and who are not shy about talking about them! But mostly, the guys and gals on here are very welcoming and supportive (which, at the end of the day is what the forum is about).

I have to admit that I also have opinions which doesn't necessarily correspond with what others say. But it is usually only in relation to my experience with diabetes. No-one else can nay-say that and I think it is important to let others know. My experience won't always chime with others, but when it does, I am sure my experience can give others hope that T2 diabetes isn't necessarily a bad thing.

As to whether I will deteriorate is to some extent under my control. However, only time will tell whether that is merely wishful thinking on my part!

Andy


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## Redkite (Apr 28, 2014)

DeusXM said:


> There's no point worrying about how you got it - just focus on making sure it doesn't damage you.



Hear hear 

Welcome to the forum Paul, and well done on your weight loss and reduction in a1c . I am intrigued to know where you get the expression "basal and bolus insulin applications"?  If there is an app to do this, I'm sure my son will want to download it!!!


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## DeusXM (Apr 28, 2014)

> And I truly believe all the research that tells me that diabetes IS a "chronic, progressive illness" (not my words). I would LOVE to believe otherwise but everything I've read tells me things are - at their own pace - going to get worst (my Endo says so too). IF you disagree, research UKPDS!



UKPDS is not a study on whether or not complications are inevitable.

UPKDS is a study to see whether reducing your A1C from 7.9% to 7% reduces your risk of complications.

A normal A1C is 4.5-6%, approximately. Technically, both 7% and 7.9% are 'high' A1Cs and therefore irrelevant in determining whether or not complications can be entirely prevented.

People without diabetes with A1Cs in the 4.5-6% range don't get the complications associated with high blood sugar. If we agree it's the blood sugar that causes the problems, rather than some inherent wider issue, ANYONE with an A1C in this range would logically avoid the complications associated with high blood sugar - regardless of whether or not they have diabetes.

Your story is a perfect example of what I've been talking about. You've taken charge of your diabetes. You've understood that it's on you, and that you can make a difference to your health, and that you need to do more than simply just take a tablet every day and then show up every few months for the doctor to tut at you. That runs very counter the philosophy behind how T2 is approached, usually.


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## Andy HB (Apr 28, 2014)

paulsw said:


> I disagree; being over-weight is not a precursor to diabetes.  Everything I've read tells me that genetics plays a much bigger role.  And while I've managed in less than a year to lose about 100lbs (over 7 stones) I don't blame my diabetes on my former obesity.  It's way easier to blame my father (LOL)!
> 
> The truth is that my diabetes would have surfaced, being fat or otherwise.  I may have pushed things along a little faster but this was going to happen and I'll deal with it as best I can.



I agree that genetics is probably the starting point, but it is not the only consideration.

I can only point to the fact that my older brother is also overweight and was diagnosed with T2 diabetes not long after I was. My older sisters have always been trim and fit and have displayed no symptoms. (Not conclusive, I know!)

Also, the fact that I have not been on any pills for nearly three years now and my HbA1c is still improving is testament to the fact that weight is important for some.

Excellent weight loss by the way (I lost around 5st in around two years but the improvements in my condition occurred 3 months following diagnosis).

Andy


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## paulsw (Apr 28, 2014)

DeusXM said:


> Your story is a perfect example of what I've been talking about. You've taken charge of your diabetes. You've understood that it's on you, and that you can make a difference to your health, and that you need to do more than simply just take a tablet every day and then show up every few months for the doctor to tut at you. That runs very counter the philosophy behind how T2 is approached, usually.



This is bad news indeed.  It would be much better to hear that everyone has grasped the concepts of this disease and how best to deal with it.  Ironically, it was my father, the one with diabetes, that also taught me how best to deal handle it.  I think this best sums it up (the last verse of my favourite poem);

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

http://en.wikipedia.org/wiki/Invictus

The UKPDS also determined that by the time someone was dx'd 40% to 60% of their beta cells had already died.  And while the purpose of the study was to determine how aggressively both T1 and T2 should be treated there was also  follow ups done showing that, at differing degrees, diabetes progresses.  BTW, there's still a lot of debate as to whether or not it was the "glycemic controls" that the study itself provided or the aggressive handling of diabetes which gained the results it did.

No matter, look after your own disease and you can avoid a litany of problems.


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## paulsw (Apr 28, 2014)

Redkite said:


> Hear hear
> 
> I am intrigued to know where you get the expression "basal and bolus insulin applications"?  If there is an app to do this, I'm sure my son will want to download it!!!



I just used the expression instead of saying "basal and bolus injections".  I wish there was an app, God knows there's one for everything else!  Now I think about it, there must be something out there to aid in the calculation of fast acting insulin related to meals.


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## Redkite (Apr 28, 2014)

paulsw said:


> I just used the expression instead of saying "basal and bolus injections".  I wish there was an app, God knows there's one for everything else!  Now I think about it, there must be something out there to aid in the calculation of fast acting insulin related to meals.



Those of us using insulin pumps have a bolus wizard function to calculate insulin doses relative to BG level and carbs in meal.  People on injections have options like the "Xpert" meter (not sure of spelling).  For carb counting, there is the marvellous "Carbs and Cals" app.  So that's all covered!!   But an app to do the whole thing.....I suppose that is the goal of the Artificial Pancreas


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## Bloden (Apr 28, 2014)

Brilliant weight loss, paulsw. That must be the most difficult part. I'm the opposite, being T1 - can't seem to keep the weight on! Welcome to our feisty lttle forum!!


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## everydayupsanddowns (Apr 28, 2014)

Redkite said:


> Those of us using insulin pumps have a bolus wizard function to calculate insulin doses relative to BG level and carbs in meal.  People on injections have options like the "Xpert" meter (not sure of spelling).  For carb counting, there is the marvellous "Carbs and Cals" app.  So that's all covered!!   But an app to do the whole thing.....I suppose that is the goal of the Artificial Pancreas




Have you spotted this little DIY Artificial Pancreas/CGM data management project from PWD in the US... http://scottleibrand.wordpress.com/...0-days-and-comparing-it-to-a-bionic-pancreas/

An interesting idea while we wait for the equipment manufacturers to creep closer to the closed loop.


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## robert@fm (Apr 28, 2014)

paulsw said:


> I just used the expression instead of saying "basal and bolus injections".  I wish there was an app, God knows there's one for everything else!  Now I think about it, there must be something out there to aid in the calculation of fast acting insulin related to meals.



I think the excellent "Carbs and Cals" app (also available as a book) is at least a step in that direction.


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## Lurch (Apr 28, 2014)

I'm strongish feeble minded and well read on T2, but not-nuff for this thread. 

Seems to me there's huge gulf between being advised not to test and just eat standard high carb diet (as I was told) because T2 is inevitably going to get worse and will need meds (as I was told), and taking every sensible step to self-control blood sugar levels down to near-nuff normal levels on diet and exercise alone.  I just prefer to do something. 

I've read enough to believe that strict (not just 'good enough') control can reverse progression and even existing complications: read excellent Dr Richard Bernstein book... T1 from young sprog he admits he was falling apart as a young man but transformed his health by his self-discovery methods. Likewise Jenny Ruhl as a T2 in her books reveals how she prevented progression though says there is no guarantee.  Her 'targets' are stricter than NHS but less strict than Dr Bernstein.

The problem with having '_does it only get worse or not_" debate on the web is that, like sickly elephants, it's possible poorly managing or deteriorating diabetics stop sharing their experiences or do not bother to use forums/fora? like this in the first place.  Them what actually die of complications can't log on to let others know, which is kinda unhelpful to science too. 

You might hope after all these years there'd be definitive studies of progression related to how individuals control or do not control.  But no.

In the end I'm happier dieting and exercising and seeing my readings keep way down for now.   For me it's too soon to answer whether progression is inevitable.  I have no identified complications so far and maintain very good levels, so as long as I can continue to use a computer and can remember my name and password, I may yet prove to be a useful N=1 survey. 

On a plus note, today DIY fixed my 22 year old trusty old VAX hoover with a brand new motor.  Shame I can't fit something similar to me...yet.


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## HelenM (Apr 28, 2014)

Professor Taylor makes the UKPDS his starting point for a lecture about his hypothesis about the development of T2 and his view that at least in some cases it can be reversed.
http://www.fend-lectures.org/index.php?menu=view&id=94
I agree that T2 is probably more than one condition; Dr Gale suggests T2 'Type 2 diabetes is a disease in search of a definition' and that it is wrong to treat it in research or in clinical practice as if it were one entity with one cause and one therapy.

http://www.diapedia.org/downloads/category_error.pdf


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## Copepod (Apr 28, 2014)

I'd like to encourage members to welcome, rather than immediately disagree with, new members. 

There are a range of views, a range of experience etc, so we don't all agree, and sometimes, agreeing to disagree if the way to go.


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## DeusXM (Apr 29, 2014)

> There are a range of views, a range of experience etc, so we don't all agree, and sometimes, agreeing to disagree if the way to go.



That really depends on whether those views are factually inaccurate. There is nothing wrong with correcting incorrect statements regardless of how new the poster is. 

This is a discussion and support board. Discussion invariably involves comparing contrasting viewpoint, and 'support' is not just blindly rubber-stamping someone else's point of view. If we all just remain grown up and feel free to disagree with each other without getting personally offended, then we'll all be fine.


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## Copepod (Apr 29, 2014)

Views = opinions. Sure correct inaccuracies, but still listen, and be sure what is being stated - especially inportant when someone comes from another country, even English speaking, as terms can be used differently. I definitely agree with not rubber stamping points of view, regardless of how long poster has been on these boards. Experienced members can be just as likely to make daft / misinformed comments as newbies. Linking to source documents online is very helpful.

Just because I like doing 3 day mountain running races and cycling regardless of weather, while some other members don't like even walking outdoors to local shops and prefer to use indoor exercise bikes or gyms, doesn't mean either of us are wrong.


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## DeusXM (Apr 29, 2014)

> Just because I like doing 3 day mountain running races and cycling regardless of weather, while some other members don't like even walking outdoors to local shops and prefer to use indoor exercise bikes or gyms, doesn't mean either of us are wrong.



Oh, absolutely. But that's a bit different from saying people with T1 can never drink alcohol, or that you'll die of complications, regardless of how well you manage your diabetes.


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