Going It Alone

[MrsGruffy]

I guess for me, going it alone, means using as many sources as I can and then making my own decisions based on the best information I can find. It's not blindly following advice, even from experts. It means asking for evidence, even when that may cause offence (because it shouldn't).
I spent some time today chatting with a friend (CNS) who has 30 years experience working in an ICU with coronary care patients about statins and CAC scans. Anecdotally, she said that they have increased in popularity, but in a number of cases where the CAC score was very high, there were no blockages found. She also said all of her patients are on statins prior to their admission - which is interesting in itself I think. She did agree with me that a very low CAC score was definitely an indication of good cardiovascular health. She said none of the specialists at her hospital believe the CAC score tests have much value, but she also said that the local chap arguing in favour was unpopular with the specialists and they might be jealous of his popularity with the public, hence the resistance to use them. So it could be down to personality conflicts which are preventing a very valuable non invasive potentially life saving test from becoming more common. Just like in every other profession, I guess. Just it's a bit rough when it's people's lives at stake, isn't it? Office politics in medical specialties might kill people - now that's some research I'd like to see done!
The world has changed since doctors were Gods or thought they were. We have a lot of access to information, some good and some complete rubbish. It is difficult for a layperson to discern the good from the rubbish. All you can do is your best, and then own your decisions and take responsibility for your own health and wellbeing. I don't see there's a choice any more.

 

[Daibell]

Many doctors think they already know everything. If only they would all be prepared to listen and learn, not judge.

Agreed. My diabetes expert GP refused me insulin when I was sitting stick thin and starving myself to manage my BS despite the compete set of full dose tablets (she insisted I start insulin at my next review a year later!). She claimed she was the expert managing quote '500 diabetes patients'. I found out later she had only come off her diabetes training course a couple of months before and she had

Do people who believe in not taking statins also believe in not taking medication for high blood pressure?

Hi to some extent yes. Many GPs/nurses don't measure BP correctly i.e. they test immediately after you walk in and only do one test; they also ignore white-coat syndrome. Also define High BP. All the BP graphs on the web show rising BP with age yet all the graphs stop around age 65. This means those of us in our 70s automatically 'need BP tablets' implying nature got our bodies 'wrong'. I don't subscribe to that unless you have a family history of BP related problems

 

[ickihun]

what do you mean by 'going it alone'?

Well I wasn't diagnosed so I did it all myself. I paid privately for PCOS treatment and then IVF treatment as fertility even at my lowest weight of 15.5st was my biggest concern at 25yrs old.
I was diagnosed with underactive thyroid and PCOS in private care. Care I insisted on but was referred by my nonchalant GP at the time. He just saw an overweight young woman. No diabetes test then either. He saw fat and did nothing. I would be still childless now if I hadn't insisted on a referral. Shame I didn't suspect diabetes then too.
Going alone means doing things yourself and using the resources you have available, currently. Limited sources.
I'm just lucky I have an avenue available to me to help with obesity. Diabesity specialist recommends weight loss for diabetes. Me too.
I will never turn my back on nhs care. It has more idea now what people like me need. Far far more than 1977.
Ok not everything I need but...... resources have to be shared. I'm thankful I have a brilliant MSK specialist now and is helping me alongside bariatric surgery. Together I should be back on my own 2 feet without an aid. Fingers crossed. Needing far less insulin to stop rot too.
I cannot wait. Walking without pain in my back/pelvis and scatica nerve numbness and pain.
I can taste an improvement to my health, at last.
My own efforts can only do so much without specialist wisdom and intervention. Of which I appreciate and will use.
Better late than never.

 

[prancer53]

Ideally medical professionals should be involved of course. I have always informed mine of what I am doing but tbh they don't really listen and I doubt if they would notice if I was doing anything dangerous.

When I am reducing my meds I research them and decide which one I like being on least and then make an appointment to discuss it. They have always agreed with me that it's OK to reduce meds when I have asked but I don't really think they are interested in what I do. So yes, in that respect I am on my own. I would love my GP to be more involved but can't force him to be.

I did have one GP who was wonderful and fully interested in my diet and health. The rest just want me out the door asap, and so I leave.
in 57 years with type 1 I've only ever encountered 1 doctor who seemed to be interested in diabetes. When I was pregnant one doc told me excitedly about results of new research: my response was that I had told him, when I first met him, that the very thing the research uncovered was what I found (over many years) had happened to me repeatedly. He responded angrily and asked if I had any idea how much that research cost & all I could say was that I knew because, as I had told him previously, the very same thing had happened to me over 25 years (with my first pregnancy) repeatedly during the time I had been diabetic. Give up......!!!!

 

[prancer53]

Agreed. My diabetes expert GP refused me insulin when I was sitting stick thin and starving myself to manage my BS despite the compete set of full dose tablets (she insisted I start insulin at my next review a year later!). She claimed she was the expert managing quote '500 diabetes patients'. I found out later she had only come off her diabetes training course a couple of months before and she had

Hi to some extent yes. Many GPs/nurses don't measure BP correctly i.e. they test immediately after you walk in and only do one test; they also ignore white-coat syndrome. Also define High BP. All the BP graphs on the web show rising BP with age yet all the graphs stop around age 65. This means those of us in our 70s automatically 'need BP tablets' implying nature got our bodies 'wrong'. I don't subscribe to that unless you have a family history of BP related problems

My GP put me on BP meds which literally nearly killed me so I stopped them, bought a BP machine & discovered that, even after 57 years of type 1, my BP is within normal range....

 

[prancer53]

My GP put me on BP meds which literally nearly killed me so I stopped them, bought a BP machine & discovered that, even after 57 years of type 1, my BP is within normal range....

During my 1st pregnancy (after 25 yrs type 1--32 years ago) I had a BP test at hospital during which I had to lie down...BP taken, sit up....BP taken, stand up.....BP taken. This was repeated many, many times. Eventually more docs & nurses arrived and different BP machines......again many docs and nurses repeated the original exercise. I began to worry when they were all in different corners of the room, whispering, so asked them if something was wrong. I was told there were 3 reason why I should have elevated BP 1) I am diabetic 2) I had, had it for a long time 3) I was pregnant BUT they were unable to get my blood pressure to go up!!!!! I responded by saying that, that was surely positive. I was told yes but I had ruined their research------You have to laugh, don't you.....I was reprimanded because I wasn't "normal". I am sure I can't be the only person like this....some research, I don't think.....

 

[prancer53]

I try to work with my hospital team but have to admit Ive totally given up on my GP when it cometo anything to do with diabetes.
I take the line that the endocrinologists know a s***load more about treatment options than I do, but that what I know when it come to my own diabetes is equally important and can help educate the medics
My favourite consultions went along these lines (2 different conltants)
Consultant 1 - diabetes always gets worse, but yours has got better. Are you sure youre diabetic?
Me - well youre the doctor, you tell me!
After which he read through all of my notes, then said “ well, yes you definately have Diabetes”
then we had a conversation about using aggressive testing, 100g ish carbs and eating to the meter as a management strategy
Consultant 2 - that hba1c is fantastic, the change from Gliclazide to Januvia has worked wonderfully
Me - actually I never changed - I didnt like the look of the side effects so I just took my carbs down further to see what that did
Consultant - oh my God dont tell me you’re doing Atkins!
Me - no mainly organic veggie diet 25-50g carbs a day
Consultant - Low carb is the way to go for most diabetics, but not many can keep to it

I had one consultant who said to me, as I walked in, "you think you know more about diabetes than I do but I know more about the science of it....." -----I hadn't even opened my mouth......where did he get that idea from.....?

 

[prancer53]

If one can't descriminate one has to live by faith alone!

Ignorance can lead to wrong decisions.
If I have doubts I can ask my daughter.
Twice in the last year she has told me not to take medications I was prescribed because they conflicted with my health situation.
D

I have learnt, over half a century of type 1, to respond to the results of my own experience

 

[dbr10]

I had one consultant who said to me, as I walked in, "you think you know more about diabetes than I do but I know more about the science of it....." -----I hadn't even opened my mouth......where did he get that idea from.....?

Perhaps you did know more about it than he did

 

[lindisfel]

And I thought thrush were birds of the genus Turdus? D.

Thrush is a fungus not a bacteria.

 

[Guzzler]

And I thought thrush were birds of the genus Turdus? D.

Not genus Candida Albicans?

 

[Tannith]

It's lung fibrosis Tannith, if you Google Metformin and lung fibrosis a recent study in the States comes up, there should be sufficient for you there in the medical magazine.
I had difficulties with a link.
Derek

Thank you

 

[Tannith]

I guess for me, going it alone, means using as many sources as I can and then making my own decisions based on the best information I can find. It's not blindly following advice, even from experts. It means asking for evidence, even when that may cause offence (because it shouldn't).
I spent some time today chatting with a friend (CNS) who has 30 years experience working in an ICU with coronary care patients about statins and CAC scans. Anecdotally, she said that they have increased in popularity, but in a number of cases where the CAC score was very high, there were no blockages found. She also said all of her patients are on statins prior to their admission - which is interesting in itself I think. She did agree with me that a very low CAC score was definitely an indication of good cardiovascular health. She said none of the specialists at her hospital believe the CAC score tests have much value, but she also said that the local chap arguing in favour was unpopular with the specialists and they might be jealous of his popularity with the public, hence the resistance to use them. So it could be down to personality conflicts which are preventing a very valuable non invasive potentially life saving test from becoming more common. Just like in every other profession, I guess. Just it's a bit rough when it's people's lives at stake, isn't it? Office politics in medical specialties might kill people - now that's some research I'd like to see done!
The world has changed since doctors were Gods or thought they were. We have a lot of access to information, some good and some complete rubbish. It is difficult for a layperson to discern the good from the rubbish. All you can do is your best, and then own your decisions and take responsibility for your own health and wellbeing. I don't see there's a choice any more.

What's the difference between God and a Consultant? God doesn't think he's a consultant.

 

[ickihun]

What's the difference between God and a Consultant? God doesn't think he's a consultant.

My consultant is very humble and is the best endo for the North of England. I've been very lucky to be given sure a caring consultant. No pretense with him. I trust my consultant. I will be looking to trust my bariatric consultant too.
I must come across intelligent as they treat me with respect and one in the past has pushed my infertility issue into the trails for metformin in PCOS treatment in the UK. My current consultant has me on new triple strength insulin Toujeo300.
I am very lucky.

I understand people being let down by old fashioned GPs and as long as there is a shortage more and more are given a bonus NOT to retire.

Maybe you should re-train and be a GP? Your priority will be assessing what is urgent in a 10mins appointment and once your notes states type2 then GPs relax unless blood pressure/heart issue. Isn't that same for none diabetes thou.? Just like infections. None diabetics get those too.

I think all we would like is our GPs to understand diabetes better. Maybe funds from diabetes charities could pay for that? Like bhf pays for blood tests at A&E.

Remember diabetes, even type1can be managed better on the right diet. Shame GPs get no nutrition training, at all.

 

[lucylocket61]

Like bhf pays for blood tests at A&E.

I havent heard of this. What blood tests does it pay for at A & E?

 

[Tannith]

We should not have to go it alone. There are some bad GPs - no profession is 100% perfect. But most of them are highly intelligent highly trained highly experienced people who have seen hundreds of patients and know much more than we do. We should be able to trust their judgement. Though of course question it sensibly if there is cause, and be heard and get a response.

 

[bulkbiker]

We should be able to trust their judgement.

Check out this thread if you really think what you have posted here.
https://www.diabetes.co.uk/forum/threads/gps-and-obesity.153764/#post-1831782

 

[lucylocket61]

We should not have to go it alone. There are some bad GPs - no profession is 100% perfect. But most of them are highly intelligent highly trained highly experienced people who have seen hundreds of patients and know much more than we do. We should be able to trust their judgement. Though of course question it sensibly if there is cause, and be heard and get a response.

I agree that we should not have to go it alone. Unfortunately, that isnt an option for many things. And its not the GP's fault they have been highly trained wrongly. However, I am not prepared to damage my health in order to obey someone wrong, no matter how highly trained they are.

as my dear old dd used to say: An Expert is a drip under pressure.

 

[lindisfel]

Hi Lucy
GPs take ten years to train and many more years to get the experience but I really feel any G.Ps on this site should respond to your post.
D.

I agree that we should not have to go it alone. Unfortunately, that isnt an option for many things. And its not the GP's fault they have been highly trained wrongly. However, I am not prepared to damage my health in order to obey someone wrong, no matter how highly trained they are.

as my dear old dd used to say: An Expert is a drip under pressure.

 

[lindisfel]

Would you guys be happy if as Michael Moseley said he believes for general health we should eat a modified Mediterranean diet?
D.