One thing I find about diabetics in real life vs online

[Ronancastled]

I know locally of 2 people who are diabetic, they don't even seem sure as to what type "you know, the one where I take the pills" seems to be the retort if I ask.

The online community seems a lot more focussed in the cause/issues/treatment.
We are at the first stage in history where patients are treating patients with online forums.
Some folks who are not tech savy or analytical are missing out on the best current advice when it comes to treatments.
They may be stuck in a progressive chronic rut where it's all downhill without any hope so why try.

What percentage of the active disease conscious community do you believe we make up ?
I'm starting to think that GP practices have basically given up on diabetics due to lack of lifestyle intervention observed on their part.

 

[VashtiB]

I completely agree. I live in Australia and in rural/regional Australia there are quite a few people with little or no access to the internet. So I am sure they are missing out on advice which is literally life changing. This is one of the reasons I participate in this forum. It is also why I am so sad when GPs including my own are so uninterested in exploring why my levels are so much lower. So resistant to change- it makes me really sad- even if it meant just one more patient found out the ripples of that would be huge- their family and so on.

Without this forum I would have been lost. And that is not even counting the amazing people on here. I am continuously thankful for the kindness and generosity I have found here. The willingness of people to help others even just by listening g. I love the supportive place I have found it.

Another thing I really like is the access to resources this forum has given me. I suspect we are a large percentage of the active disease conscious community as statistically type 2 diabetes is a huge number of the population. I am sure there are others though and it would be great if there was sort of a place for representatives of all to share resources- a sort of go to directory or something. There are so many here battling other conditions they may well be aware of other communities.

 

[muzza3]

Hi @Ronancastled & @VashtiB

I agree with your thoughts here. Like VashtiB I come to this site from Australia. In Australia there are an estimated 1 million plus Type 2 Diabetics alone and that critical mass is not enough to support a viable community forum like this. In the UK there are an estimated 3.9 million type 2 diabetics alone and if you look at this sites members and visitors etc it gives an indication of how small the percentage is that are focused on seeking solutions and gaining control of this disease.

It is understandable to some degree as so many put their faith in the medical advice and support the local authorities and GP's are giving them and still amazing to me at how consistently much of this mainstream advice is still so wide of the mark across the world.

I promote this site to any fellow diabetics I come across and am so thankful that I have access to so many "real life case studies" to examine, ask questions and make informed decisions about my diabetes journey

 

[Riva_Roxaban]

In Australia there are an estimated 1 million plus Type 2 Diabetics alone and that critical mass is not enough to support a viable community forum like this.

Diabetes Queensland have a small forum that started off about six months ago I think, it seems to be T2 orientated. I have posted a coupe of times there as I am a member of Diabetes Queensland so I was automatically joined.

https://community.diabetesqld.org.au/home

https://community.diabetesqld.org.au/login?ReturnURL=https://community.diabetesqld.org.au/home

 

[Mike d]

The tyranny of distance I'm afraid and the rollout of broadband. We're talking massive MASSIVE distances. The entire UK could fit 32 times over in our continent with their 68 million to our 26 million.

 

[Goonergal]

What percentage of the active disease conscious community do you believe we make up ?
I'm starting to think that GP practices have basically given up on diabetics due to lack of lifestyle intervention observed on their part.

Quite a small percentage. However there is some change going on beyond thanks to the work of people like Dr Unwin and other GP practices who’ve followed his lead. The Public Health Collaboration has ambassadors, volunteers who raise these issues with GPs and other health professionals and there are a growing number of practices which use referral to peer support groups.

My own surgery, for example, now refers (or at least it did until lockdown made things more difficult) interested type 2s to me so that we can support each other. That took a lot of negotiation and a DBS check (which I already have for my paid job), but there’s been a fair bit of interest.

Dr Unwin and others run free training courses for healthcare professionals interested in low carb, so I do think things are slowly changing, but difficult when it contradicts the official government advice.

 

[searley]

I come across a lot a diabetics

It’s surprising how many assume they are type1 just because the take insulin

I say assume, because the have not asked or been told the just consider insulin = t1

A couple I’ve questioned have gone back to doctor and been told type 2

I’m my opinion this is just an example them not really caring or showing any interest in their illness

 

[VashtiB]

@Goonergal - that is great the referrals!! it must be so good to actual be able to help those people. I just wished my doctor was even a little interested in how my levels have come down. she almost visibly shudders when I talk about pork crackling lol.

I am actually going to change doctors because of her attitude- I am now sick of having to justify my choices and have put off blood tests to avoid dealing with her.

 

[jjraak]

A good question @Ronancastled

Liking the patient treating patient.

I always look at stats for diabetics with deep suspicion now.
Given it is rare to see anything but the whole group of types as one.
And given some stats put T2D at 90%

The "% of anything is prevalent in all diabetics = statins" type of discussion
To my mind is fundamentally wrong

Historically & factually correct, but seriously flawed.

Years of treating an intolerance of nuts, with a care that suggests eating only 10% less, is the answer, seems wrong.

Especially when the very " cure" seems to make the slide into complications almost automatic, doesn't reflect the true condition

@VashtiB echoes once again many of my thoughts

I too spoke to many T2D once I was DX'd n aware.

Few bothered listening .
'oh I couldn't eat like that'. To ' no, my insulin lets me eat what I want"
Afraid I rather gave up, and now only mention beyond the fact I treat T2D with LCHF, when real interest is shown, which is rare from a T2, sadly

Can't blame them in some respects.
All you hear is " it's progressive,. So just eat the same but less..."
And it's Like old age & death, and who really thinks that's coming to them when reasonably fit n healthy ?

My docs don't seem interested.
It's like a tick box exercise.

As to percentages....mmh

From others posts & my own observation, I'd wonder if we are even 1% of the registered T2D community.

Throw in the on the edge of it but unaware, and we are just a blip in the ocean

Sites like this make a difference.
But sadly too many believe what the HCP tells them without question.

I was one, but the seriousness of T2D made me look beyond

So I think the searching/ access to info is great, but sadly too few want to know or will bother until the message is much more mainstream.

Getting there at glacial pace, welcome though it is.

IF, and it's a horrible nasty big IF

Anything good comes out of the Covid pandemic, it might just be the realignment of our overall health where it's comes to diabetes.

The fact diabetes was a co-morbidity, raised its profile.

Add in the impact covid may have had in newly DX, suggest the research & treatment may be less dogmatic in future

At least I hope.

 

[Bildad]

I wonder if part of the issue with people diagnosed with Type 2 diabetes is that historically they tend to be in the older age range so their first instinct is not to Google anything it is to follow the advice given to them by their trusted family doctor. As time passes and those diagnose are younger / more used to googling for answers / more sceptical perhaps this LCHF way of treating Diabetes will become more mainstream.

 

[Andydragon]

I wonder if part of the issue with people diagnosed with Type 2 diabetes is that historically they tend to be in the older age range so their first instinct is not to Google anything it is to follow the advice given to them by their trusted family doctor. As time passes and those diagnose are younger / more used to googling for answers / more sceptical perhaps this LCHF way of treating Diabetes will become more mainstream.

Well not sure this is totally true. First off T2s in the younger bracket have been diagnosed for well over a decade now, I’d be interested if the stats for older diagnosis is still true. Also age as a factor for not googling... I’m not sure on this either, bit of a generalisation...

however trusting the health professionals could definitely be a factor. I know Ive trusted mine and I’ve lived the growth of google. I tended not to google it much. Even now when I do, There is a lot of conflicting advice for T2s, not everyone advises LCHF, it also doesn’t always work for everyone, but the evidence is growing.

thing is, Diabetes as we know is extremely serious. Coming from T2 as that’s my experienc I know best to talk of, it is insidious, the effects seen many years down the line, it is easy to just keep eating the same old stuff, pop a few pills and by the time it’s too late, well, it’s too late. Re educating is a challenge, this forum helps but change needs to be pushed at all levels, teaching kids how to cook in schools, tackling junk food, re educating doctors with the newest findings. But when you have competing interests (LCHF vs fast 800 vs whatever) it’s hard.

well, that’s my thoughts anyway

 

[Ajax]

By the same token, I financially Support several diabetes organisations ..which I feel I 'belong' to ..but when I attend a real-world event sponsored by one of 'em ..I'm treated like a ✻freeloader✻ ..my expectations aren't matched by the reality.

 

[Brunneria]

We don’t need google to prompt us to question stodgy medical thinking - we just need a single bad experience.

I learned not to take my doctor’s opinion as gospel over 35 years ago when he ‘diagnosed’ me with a squint and told me to go to an optician for glasses. It was actually soreness in both eyes (can one squint symmetrically?) caused by a new brand of eyeliner. But I had to work that out myself... I was 17. The same willingness to question established mindsets is helpful in many areas of life.

Equally, we don’t need the internet as an info source. There are plenty of others out there. My first book on Reactive Hypoglycaemia and blood glucose management by dietary choices came from Waterstones in the 80s. Then my first Low Carb/Paleo/food combining info arrived the same decade, from magazines, second hand bookshops and the library.

In my opinion, the one and only thing needed to start looking for answers is curiosity, and then the thing needed to carry on is good ol’ persistence.

 

[Daibell]

Hi. I think we represent a very small percentage of those with diabetes. There is a mix of issues including the patients themselves not asking questions or listening to the GP. There is a high level of ignorance amongst GPs about diabetes. I've experienced this myself and having read 1000s of posts on this forum some of the GPs' input is scary. I think the days of GPs are numbered mainly because the range and depth of conditions continues to expand and there is no way a typical GP can provide good support across a range of conditions. The future lies in more referrals to Diabetes clinics (not that mine is any better than the local surgery). Across the world there is a lack of understanding of the range of diabetes types and appropriate diagnosis and treatment so Diabetes training is poor. BTW I include DUK (not this website) where there is ignorance and conformity with the 'Establishment' view so we are not lead in the best way. Malcom Kendrick's book 'Doctoring Data' is a good expose of the way the medical profession is very close-knit and your are not expected to 'rock the boat' with divergent views. Things have improved since my diagnosis 15 years ago so there is hope!

 

[oldgreymare]

In hindsight I was super lucky to be initially diagnosed in a system (Singapore) that fast tracked all potential diabetics to endocrinology assessment. My endo there was genuinely upset that I was clearly T1 (actually possibly still LADA at that point) given diagnosis age of 51. Next endo in Bangkok was also very supportive, encouraged 3 month assessments of typical panels (HBac1, lipids, liver, kidney), also D3, Mg, K, other electrolytes.

Returning to the UK, pragmatically I won the postcode lottery rejoining my 1990's GPs that has great GP diabetes specialists, plus several specialist DSNs - and more importantly the local hospital endo clinic is a top UK research diabetes centre. That said, I have T1 friends that are not getting anywhere with this same clinic. Sadly its a two way street - BOTH patients and clinicians need to engage.

 

[alf_Josiah]

Priorities, patient per doctor ratio, quality of GP practice all contribute in my opinion. Please note in my unqualified opinion.