Non-Compliant??? - DSN problem

For me, I give any meds a try. If they have a very bad effect I go back, if not I carry on. But they should not bully you they only should advise you, but not bully. Before I stopped smoking everything I went in the surgery was the smokings fault :crazy: . Now its my weight, I wonder wether if when I get rid of all my weight, what will they blame things on :lolno: .

Paul, My advice to Lucy about taking the meds was based on her desire to have a cholesterol est wihout meds. Actuall I think the test is influenced mostly by the previous day - so she would only have had to stop taking the pills for a feww days - or so I have been old.

I was piut on 40mg of simvastatin immediately upon diagnosis before any test resuls were available. Whatever my choleaterol does no one revises it. I changed pracices 3 years ago . My medication has only ever nbeen revised ay MY instigaion. I even had to enlist the help of the hosital MYSELF and look up dosages on the internet to ge approriate medication. It was insulin or nothing.

I am now a long way away from insulin by my own efforts.
Lucy's practice sounds very like mine. Sometimes it is necessary to be pragmatic aboout what can be achieved within the system.

Anyone who has never had to play politics with and "work " the system is very fortunate or maybe recenly diagnosed and not on ANY meds.
Or maybe living in Utopia,

This has been a bit of a soap box of mine for some time. I have refused statins - they are pushed at every diabetic appointment as whoever I see looks at the total cholesterol rather than the ratios. When I saw my regular GP for my last diabetes check up he seemed to accept my decision not to take them. I'm not exactly an NHS compliant patient and he suggested that my "proper" diabetic reviews are done annually rather than 6 monthly as I seem to be doing very well other than the cholesterol :roll:

My own views are that cholesterol may be a bit of a red herring if you don't have heart disease already (I don't, i have been to the cardiac clinic after chest pains which were relted to muscle injury/whiplash and a panic attack). However, the medical norm is male. It seems obvious to say it, but women are different and our cholesterol tends to run a bit higher than men as normal.

I have attached a link to a fairly easy to read paper about women and statins which I found on a womens health website - Our Bodies, Ourselves. I consult this website before I make any decision about my (non emergency) health. it tells you all the stuff doctors don't necessarily mention, especially as the medical norm is male so that makes about 50% of us non compliant without doing anything at all :roll: :wink:

http://www.ourbodiesourselves.org/book/ ... apterID=29

That said, no one can force you to take medication. It is against the law. And if not accepting medical advice is likely to kill you in the imminent future, they will make that very clear. I prefer to be up front about what I do and don't do and am fortunate that my long term GP and I have a very good relationship. And if I had a medical emergency, any doctor treating me would not be under the illusion that I was taking medication that I wasn't actually swallowing, which could have an impact on any proposed course of treatment. However, as others suggest you could simply accept the prescription and not get it made up.

lucylocket61 said:

My BP is 120/70
and my cholesterol is:
Total: 4.5
HDL: 1.2
HDL ratio: 3.8

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I'm not an expert (by any means) but those numbers don't look too bad to me...

These are the American Heart Association Criteria (I've marked your numbers with a little bunny rabbit):

http://www.vaughns-1-pagers.com/medicin ... -range.htm

Firstly your BP is great :thumbup:
Your Total Cholesterol of 4.5 is "Very Good" :thumbup: (=146 mg/dL on the chart above)
Your Total Cholesterol Ratio of 3.8 is "Good" :thumbup:
Your HDL Cholesterol is borderline (it's a bit too low) :thumbdown: (=46.4 mg/dL on the chart above)

Unfortunately, you can't work out Triglycerides or LDL Cholesterol from the numbers they've given you - but I bet those are good to give you Good Total Cholesterol and Total Cholesterol Ratio.

So what you need to do, is make you HDL Cholesterol higher. Absolutely the best way of doing this is by adopting a low-carb diet. Which you are doing.

There is no evidence whatsoever, that statins improve mortality for women. I think you need to get a second opinion before taking any.

I also meant to add this link to a pdf document about statins and women.

http://www.whp-apsf.ca/pdf/statinsEvidenceCaution.pdf

Spiral said:

I also meant to add this link to a pdf document about statins and women.

http://www.whp-apsf.ca/pdf/statinsEvidenceCaution.pdf

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I haven't tracked down the later studies but there is a Reuters article dated Jan 2012 which overviews some more results regarding the effect of taking statins on women.

http://www.reuters.com/article/2012/01/ ... GN20120131

lucylocket61 said:

Thank you for the charts borofergie. I think my latest figures will be better now I have been low-carbing for a while. I just wish there was a way to find out as the surgery wont test me. I may try another doctor there, perhaps the locum............

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I'm sure they will be. They aren't bad to start with, and a bit of low-carb will almost certainly make them even better...

Your Total Cholesterol of 4.5 is "Very Good" (=146 mg/dL on the chart above)

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I make it 174mg/dl so in the 'good' section

phoenix said:

Your Total Cholesterol of 4.5 is "Very Good" (=146 mg/dL on the chart above)

Click to expand...

I make it 174mg/dl so in the 'good' section

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You're right Phoenix. Still not too shabby though.

I would consider changing to another practice in your area...

As yes writing a complaint is fine... But if you are unhappy with how you interact together then it's unlikely a complaint is going to change that, as the damage is done really...

A biggest part of our care and how well we do, is based on our relationship and trust with have with our HCP, once broken it's hard to repair if at all...

My old GP, told me this many years ago, before gp diabetic lead care.. My diabetic consultant had made a right ash of things, so my GP arranged with a friend who happen to be an Endo consultant in a different non-diabetic clinic to see me in his clinic! As my GP said, I would never regain my trust with another consultant in the diabetic clinic at that time! I've only been under the diabetic clinic and my present consultant for around 8 years... My original consultant retiring several years before I returned to the diabetic clinic..

I suppose people have to be in the situation that Lucy and I are in o realise that where some may glibly advise saying his that ot t'other to your GP is really not an option. My GP pracice is a large one with 0 GPs and i is their policy not o speak to paients about any aspect of their diabetes.
So where are the seciond opinions etc to come from. Lucy is fairly newly diagnosed - even less chance of her being listened to.
That is reality and anyone who doesn' accept this may well have a rude awakening one day.

If people read my post hey will see that I told Lucy that she could get a cholesterol est from high st chemis shops. if she doesn't want t do this and wants a cholserol es unaffeced by the satins she should no take them until she has the results.
I did no recommend she did this on a long term basis.

She said at the outset hat she did not want to be confrontational. This is very wise in the circumstances . She will have to deal with the DN probably for quite some time. She is not yet confident about so doing and until she has been diagnosed for longer and is showing improvenment very littlw will change.
My adice was pragmatic and based on experience.
I am by no means a shrinking violet and have fought and won many bales of this kind but you have to choose your battles and batlegrounfds very carefully. Make sure you are ion firm ground and hopefully have plenty of ammunition.

Sme people may be fortunate enough to have wonderful doctors and HCPs who consider them as individuals and constantly check the interracions of their medication but too many of us find that once consigned to the care of the DN as the sub -species diabetic
mos of this goes by the board. Even at the annual review they can harly be bothered t check on the previous screen.

Lucy can of course refuse the medication. I fought a 2 year battle o stay off insulin. The DN told me I wold have to go onto an alernative which the NHS prohibits its use for people with my complications. She didn't know. The doctor din't know. I didn't knnow - but I suspected and I refused it. When I complained after checking on this i was met with blank faces and denials.
I wonder how many people have been blinded in this way.?
This is reality folks. It may not be realiy for you and if so I am very pleased for you but i is reality for many.
Lucy must first do whatever she has to do to saisfy herself abou her cholesterol. Then she can challenge the prescrpion if she hinks this is the righ hing to do . If she is convinced statins are not for her and she sill doesn' fancy a confrontaion she could ry finding that none of them suit her citing side effects.
When you can't rust the people treating you and you cannot change your Practice then you hjust have to find a way to cope.
My DN uses amnesia as her main weapon, She makes no notes and acts as though she has never seen me before . The pretence drops at some point. They all have their own agenda.
We all know we can make complaints and appeal tp PCTs and see the Practice manager and speak to PALS etc. On a pracical level it is difficult enough dealing with hese people at any time wihout urning i into utrigh war when the accuse d will only claim they were ober=ying orders,
If you are on various meds and fairly new ly diagnosed you have o see more of them.
It is often necessary I have found to check for myself the effect of various medications. No one seems to mind. They usually accept my conclusions. DIY medecine.

Right, forget about American units, courtesy of Viv let's compare to the NICE guidelines

viviennem said:

NICE gudelines for cholesterol levels from about 2004 - don't think they've changed much:

Target levels:
Total - below 5 Lucy got 4.5 :thumbup:
HDL - above 1.4 Lucy got 1.2 :thumbdown:
Triglycerides - below 1.7 and the lower the better Dunno
LDL - below 3. Dunno

Very important is the Total:HDL ratio - target is below 5:1, and preferably 3.5:1 Lucy got 3.8 :thumbup:

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So like I said before, your HDL is a little bit too low. But you can easily sort that out with low-carbing. Even though we don't have the numbers, I doubt that your LDL or Triglycerides are bad either (otherwise your Total Cholesterol would be higher).

Unless they know something that we don't, it's hard to see the rationale for prescribing statins.

Borofergie, More than likely there IS no rationale . It may be something they have been doing for years. Lucy could challenge i but
she would be beter to do so from a position of strength and when she feels confident .

She may even be able to change things for other patients if she goes about it the right way.

I see Jo shares my cauion about complaints etc, if Lucy is stuck with her practice , as I am bu for different reasons she has to be pragmatic and cope with the situation as it actually is. As time goes on and her levels improve she may only have to see the Nurse very occasionally and it will be just routine.
Just thought , cholesterol esting is not only available at pharmacies but home tesing kits are available to buy om he net.

Lucylocket, you dont say why you do not want to take medcation. Its been proved statins and anti hypertensive drugs save lives. The risk of strokes, heart attacks is increased if you have these conditions with diabetes and obesity.

johnny37 said:

Lucylocket, you dont say why you do not want to take medcation. Its been proved statins and anti hypertensive drugs save lives. The risk of strokes, heart attacks is increased if you have these conditions with diabetes and obesity.

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What is the truth - are more lives "saved" by statins & their protective effect than are damaged by statins & their harmful effect ?

Lucy, I understand how you feel about getting upset in the surgery. I not only burst into tears when bullied, I cry through frustration, anger and just being plain miserable! My poor GP! I used to burst into tears on him regularly, every February - until I started taking my Vitamin D3 and came out of winter not feeling depressed :lol: :lol: :crazy: .

Seriously, though - a lot of these statistics about diabetics and likelihood of heart disease, stroke etc are based on results from a few years or even decades ago, and therefore most likely on people with poor control of their blood glucose levels. We're getting better as the technology changes, and the stats may well be changing in our favour.

You have already spoken to the DSN about your views on these medications. If she starts on about them again, nerve yourself, if you can, to say something as simple as: "You already know my views on this. I consider you are now bullying me, and that is a very serious thing. As a patient, I do have rights."

Or you could say: "You already know my views on this. I do not wish to take these medications at this point."

Try very hard after that not to get involved in any further discussion - that will upset you.

If you can take someone with you, do. You will have a witness, so it's not just her word against yours should it go any further. It's extremely unprofessional of her to bully and threaten you.

I'm non-compliant too, by the way! Don't know if it's official - I shall ask the nurse next week. Oh! - and I was taken off my BP meds in January (2.5mg (or micrograms?) of Lisinopril )- and my BP is not as low as yours. That was at my request, because my figures are now normal for my age. They know I won't take statins because of previous side-effects, and nobody is trying to force me - yet! :wink:

Statins are undoubtedly very good for some people, and I respect anyone's informed choice to take them or not. However, I would suggest anyone who doesn't know any wrong about them should Google Duane Graveline (ex-NASA doctor) and Stephanie Seneff (Professor of Bio-engineering, I think). Some interesting reading.

A word in your DSN's favour - she may only be trying to meet her QOF targets, and may herself get told off if she doesn't prescribe the meds. Tough! I think the QOF target for diabetes total cholesterol is 5, but I'll check.

Viv 8)