Refusing to take statins. What can my doctor do?

Posted , 24 users are following.

Hi,

Having read a lot about statins, the very high numbers needed to treat and the harm they can do, I told my doctor I did not wish to take them. We almost ended up by arguing as she dismissed my concerns and insisted that her advice is that I should take them. Mu current level is 7.3.

I showed her research which showed the numbers needed to treat (NNT) for statin use in those who have not been diagnosed as having heart disease is between 50 and 250; I showed her a pro-statin study which said if 1000 patients were statinised for 5 years, just 18 events of cardiac disease would be avoided. The study hailed that as a success!

Still she repeated her advice. I asked if I still refused would she have me exception reported as a non-complier and she shrugged which I took to mean 'yes'.

My previous doctor, now retired, understood my reluctance to take statins and the reasons for it and didn't push them onto me. It seems that the new doctor is now bullying me into taking her advice to take statins.

Blood tests have all shown my liver to be functioning as it should and yet the new doctor told that if I take the statins I must have another test to ensure they are not damaging my liver, a known possible side effect!

Given the huge controversy around statin use, can anyone tell me where I stand if I still refuse to take the doctors advice? Can she kick me off her list at a surgery where I have been a patient for 70 years?

4 likes, 53 replies

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  • Posted

    Tafia - You can take or refuse medicine as you wish. Doctors often have to weigh up the pros and cons of medicines. I am type 2 diabetic and also have fatty liver (although not excessively overweight). I had three goes at various statins (my cholesterol was about 6.5) but I suffered severe muscle pain in both my shoulder and hips (mainly left side); no mention was made of them further damaging my liver. Because of side effects I declined to take any more statins.

    With a change of doctor, she suggested I have another go with them and I am currently on 40mg Simvastatin, I have found that by taking them with my evening meal, instead of last thing at night as was previously the case, I have avoided any apparent side effects and my last Cholesterol was 3.5.

    I think the problem is that there are arguements from all sides which are partisan and people feel they are not getting the full story or the 'truth'.

    Personally I am against taking any medication that is not immediately needed and the idea of pumping half the population full of any medication 'just in case' can only be storing up more problems later on.

    Ultimately we are all going to die; most of us would prefer it was later rather than sooner but if one thing doesn't get us something else will. As you say, you might not get a heart attack but could meet your demise from a result of side effects from a medication.

     

  • Posted

    Well you are an obsinate old B****r just like myself. At our age, what the Hell, how many years are they going to add to our lives?

    If you have not had any heart trouble or strokes do you really need them. Have you had your levels tested before? If so how much have they gone up? Las year I was 5.7 and this year 6.3 and my doctor will test me again in three months.

    I did start statins in March 2011 when I was found to have aortic stenosis but my areteies were clear. It was not long before I had muscle pains so I stopped and started a few times to prove the point. No way will I take them again.

    She has every right and needs give no reason to reject you as a patient if she so wishes. You could of course take the snaky way out and take the prescriptions but not take the tablets. My GP says that 40% of his patients don't take what is precribed so join the Club.

    Latest from today's Daily Mail............

    Millions of healthy Britons are about to be given statins needlessly and exposed to debilitating side effects which include muscle pain and diabetes, leading doctors warn.

    They say NHS proposals to radically increase the uptake of the drugs are a ‘public health disaster’ that will cause harm to many patients.

    The group – which includes cardiologists, and senior GPs – is urging the government and the NHS drugs watchdog NICE to halt the plans. They also claim that eight of the 12-strong panel of experts who are drawing up the guidelines have financial links to drugs firms making statins – which stand to make a profit.

    About seven million patients in Britain take statins to lower the cholesterol in their blood to prevent heart attacks and strokes. They are predominantly given to over-65s who have been diagnosed with heart disease or have a high risk of developing it based on their family history or lifestyle.

    But in February, NICE – National Institute for Health and Care Excellence – published draft guidance advising GPs to prescribe statins to anyone with a 10 per cent risk of suffering a heart attack or stroke within the next decade. It claims this could save many lives at a minimum cost to the NHS as the drugs cost as little as 10p each.

    Experts say this would lead to the drugs being given to between five and ten million additional patients.

    NICE will publish its final guidelines next month.

    But the group of doctors say there is no evidence that giving statins to healthy people increases their life expectancy.

    On the contrary, they point to evidence showing they increased the risk of diabetes in middle-aged women by 48 per cent and cause fatigue and muscle pain.

    The group also accuse NICE of looking only at evidence about benefits and possible side effects of statins that have been provided by drugs firms, which could be biased.

    The leading doctors also argue that rather than prescribing statins, the NHS should be encouraging patients to lose weight and take more exercise.

    In a letter to Health Secretary Jeremy Hunt and NICE, they wrote: ‘The consequences of not withdrawing this guidance are worrying: harm to many patients over many years, and the loss of public and professional faith in NICE as an independent assessor.

    ‘Public interests need always to be put before other interests, particularly pharma [the drugs industry].’

    Professor Simon Capewell,  professor of clinical epidemiology at the University of Liverpool,  one of the doctors against the move, said: ‘The statin recommendations are deeply worrying,  condemning all middle-aged adults to lifelong medications of questionable value.’

    Dr Malcolm Kendrick,  a GP  and member of the BMA General Practitioners sub-committee, who is also a member of the group said: ‘Who knew that millions of people  in the UK now suffer from statin  deficiency syndrome? Mass statination is a triumph of statistics over common sense.

    ‘Treating millions at a cost of billions based on data we are not allowed to see is an example of the corporatisation of medicine and will result in a public health disaster.’

    And Dr David Newman, director of clinical research at Mount Sinai School of Medicine in New York, said: ‘For most people at low risk  of cardiovascular disease, a statin will give them diabetes as often as it will prevent a non-fatal heart attack.’

    In response, Professor Mark Baker, director of the Centre for Clinical Practice at NICE, said: ‘Cardiovascular disease maims and kills people through coronary heart disease, peripheral arterial disease and stroke. Together, these kill one in three of us. Our proposals are intended to prevent many lives being destroyed.’

    And now for the punch line:

    Concerns have been raised that eight of the 12-strong panel recommending widespread use of statins have financial links to the pharmaceutical companies that manufacture them.

    They include Dr Anthony Wierzbicki, chairman of the NICE panel and a heart disease specialist at Guys and St Thomas’ Hospital in London, who has ties to six firms, including Pfizer, Sanofi and Aventis, which sponsored his research into cholesterol-lowering drugs.

    Dr Michael Khan, a heart specialist at University Hospitals of Coventry and Warwickshire, has been paid by drug companies investing in heart drugs to give lectures and sit on advisory boards. They include Amgen, a US firm which makes statins that has sponsored him to run a clinical trial.

    Emma McGowan, a specialist heart nurse who also works at University Hospitals Coventry and Warwickshire, was sponsored by statin manufacturers AstraZeneca for the first year of her job. She was also paid by the same firm to attend conferences.

    Dr Robert Dermot Neely, heart specialist at the University of Newcastle, has been paid by statin makers Roche, Genzyme and Aegerion to sit on advisory boards.

    The experts declared these conflicts of interest to NICE. The Mail contacted them for comment but did not receive a reply.

     

    • Posted

      Very helpful and informative post Derek, thank you for taking the time and trouble to research and place the info on here.  The more I read, the more I understand that the bottom line is that 'high cholesterol' isn't the issue in the slightest.  Evidence suggests that statins, in the right circumstances, do reduce the risk of heart attack and stroke but that it is TOTALLY unconnected to their cholesterol reducing effect.  Other factors come into play.  I've posted some info about yet another book written on the subject, which explains why cholesterol is NOT the enemy and that heart health isn't a simple matter of complying with a commercially set random figure.

      In response to the original post, Derek is correct when he states that GP's can request removal of a patient from their list and do not have to give very much justification but conversely we as patients have every right to refuse to take any given medication; sometimes a doctor may ask the patient to complete a declaration to state they have gone against best advice but really this should not be sufficient cause to remove you.  I totally agree with Derek that if you are at all fearful of causing problems by refusing to take statins, do as I did - I had mine on repeat prescription and collected from the pharmacy monthly, I just stockpiled for a while, then stopped collecting them. The pharmacy only refreshed the order as and when I picked them up so they no longer collected or filled any new prescription and nobody was any the wiser.  That was three years ago and would you believe it, not one doctor at my group practice has ever bothered to ask 'are you still taking them?' or if they presume I am not one has offered a cholesterol test or a liver enzyme test in all that time.  I find that of very great concern as for all they know I could now be dying of liver failure - makes me angry to say the least. 

    • Posted

      My doctor once said that 40% of prescriptions issued are not taken.

      I said to him that many people take meds like Bisoprolol at night to avoid side effects duing the day. He said that very few patients ever tell him what they do.

      He does take a statin and is not affected by it as he still runs marathons. 

  • Posted

    Thanks for your responses, folks. I recall my levels were above 8 a couple of years ago and my doctor at that time did not push statins onto me as the new one appears to be doing.

    I have lost about 10 lbs in weight in the last few months so that may be one reaon the level has fallen. My new GP did not mention diet and exercise as the Mail article above suggests.

    I did ask if I could reduce the levels by diet ( not that I want to reduce it as it seems a level just above 7 could be protective, from what I have read) but she repeated that her advice was that I should take them.

    I object to taking them as I have read a lot on the subject and the number needed to treat is very high; a lot more than 1 in 50 whilst the chance of them causing me damage is much greater.

    It seems bizarre that I am being recommended to take a drug which has the potential to damage my liver, this potential must be quite high or she would not be telling me to take a blood test for liver function a month after starting on statins.

    Does any one know what being "exception reported as a non-complier" means?

    • Posted

      I've replied on this subject on many other threads on this forum but one comment above from Derek really puts it into perspective. The group – which includes cardiologists, and senior GPs – is urging the government and the NHS drugs watchdog NICE to halt the plans. They also claim that eight of the 12-strong panel of experts who are drawing up the guidelines have financial links to drugs firms making statins – which stand to make a profit.  This IS the bottom line.  The reason the advice from NICE to GPs has changed re the level at which pharmaceutical intervention should be taken is purely down to the buying power of the drug companies, nothing else.  High cholesterol alone has never been proven to heighten the risk of heart disease, only if there are contributory factors and even then high LDL has to be read in conjunction with other results, never on its own.  We the unsuspecting average patient are specifically excluded from the true data relating to conditions such as necrotising myopathy and myosotis, google them - it doesnt make happy reading.  Off patent statins are cheap, GPs are part funded to prescribe them - result is that everyone gets them whether they need them or not and with sometimes terrible permanent detrimental effects.
  • Posted

    Go to another member of the practice! I took statins for just 10 days 2 years ago and couldn't walk 50 yards after a week because of the muscle effects. The cardiologist I was under was perfectly happy. It took a year to get back to anything like normal. Two years later my cholesterol is now just about normal through diet - only not normal because the HDL is so high! 

    She probably thinks you don't understand the science - but I understand it the same way you do. The thought of "everyone over 40" being given them scares me to death. But darn the woman - it is MY/YOUR body and like you, I see no reason to poison it with them to make money for the drug companies. 

    • Posted

      Thanks to all for your responses. I read an article the other day by a neurosurgeon who was saying the same things. He said he had been taking statins for 8 years but when he began looking at the research, he realised there seemed to be hardly any evidence they would do him any good.

      He quoted the Hunt study of 2011. “The lower a womans cholesterol, the greater her chance of dying either of heart disease or anything else, including cancer. For men, high cholesterol was associated with heart disease and death from other causes – but so was low cholesterol! A range of between 5mmol/l and 7mmol/l was the optimum level”

      Anyone know what exception reporting and being named a non-complier means to our future care?

    • Posted

      It shouldn't have any - if it does report it first to the practice manager and if that doesn't work go to your local complaints person (not sure how it works now but it is the commissioning people who have replaced the primary care trust). I imagine the practice has a new computer that flags up when patients need to be "counselled" about problems. Some even have a bit about "counselling" for (for example) smoking or weight loss even if you went for a holiday jab and it wasn't appropriate anyway.

      The entire point of the original clinical trials was that in women who had already had a "cardiovascular event" (heart attack or stroke), reducing cholesterol improved their chances of not having another. The same applied for men whether they had had an "event" in the past or not. But for women who had not yet had an "event" reducing cholesterol made no difference. But that wasn't mentioned - the drug companies would have lost a lot of clients and hence money and so they lumped all the figures together for total population figures

      Why the effect happens isn't entirely clear - because as the chap above says, the figures are very unclear and finally it is being suggested that the cholesterol story as perceived wasn't like that and eggs have been reinstated as "good" food. What it has done is send everyone to eating low fat food - or "high carb" food due to the added sugar and now we have an obesity and diabetes problem that is far more dangerous than the cholesterol one ever was.

  • Posted

    As the cholesterol is actually produced by the liver it may be that your doctor is wanting to check the values of various outputs from the liver.

    As to diet; I have read many conflicting stories about how diet affects cholesterol as it does notcome directly from what you eat. Eskimoes eat masses o blubber - whole fat yet have low cholesterol. My doctor said there was no need for me to stop butter or bacon.

    I have a feeling the levels are tied to genetics as my mother also has a cholesterol level of about 6 (at age 82). Her doctor has pushed her to take statins bu she got tsme side affects as me.  told her that,at 82, it's probably a bit late to worry about cholesterol levels.

    I think with diabetes it may be a bit more crtical as the disease can give a higher rsk of heart attack and stroke.

    I don't understand what your doctor is saying but she may be under pressure to place patients on Statins so she will record you as having been offered but refused. It is very unlikely she would want to shed you as a patient because of that; it sound like she is not very good at communicating since all current instructions are to put patients at the heart of their treatment and give them full control over all aspects of their treatment.

    • Posted

      What on earth is a doctor doing trying to persuade an 82 year old with a cholesterol of SIX to take statins for? 

      I realised after I'd written it and couldn't edit it - my diet has increased the HDLs but I've lost weight though diet and that makes me able to exercise more. It all works together. 

      And I suspect you are right about box ticking!

      I've said ever since they first started the fad that dietary cholesterol is bad: if you don't eat it the liver will make it, and guess what? twenty years down the line they admit that now. 

    • Posted

      Exactly; I have urged my mother to consider not taking them  but she takes the doctor's word as gospel. I wonder if the doctors are on some kind of financial incentive.

      When they told me my cholesterol was high they obfuscated about what it should be and what 'normal' is. I changed diet (my wife is vegetarian and so I have to follow that, so I am hardly a big intaker of fats) but I gave up butter for Flora, and cut out the last meat dishes I enjoyed (a fry up with sausages and bacon) only to be told by the hospital consultant that it didn't make any difference since it was my liver which was creating the cholesterol and the statins slow the process down.

       

    • Posted

      Can you say if those instructions are anywhere on line so I can quote them?

      As I mentioned, all my blood tests for electrolytes, urea, liver function, thyroid function and fasting blood glucose have come back OK for many years including one a month ago.

      The only one deemed not OK was serum lipids.

      Seems bizarre I am being told I should take atorvastatin when, from what I have read, the chances it will do me any good are less than 50 to 1 whilst the chances it will do me harm are perhaps 5 to 1.

      "Your liver is fine to take this drug which might harm it".

      f I drank booze to the exent there was a risk of liver damage, no doubt my doctor would warn me to cease!

      Seems medicos are now treating risk factors as well as actual disease.

      Dr Phil Hammond wrote in one of his books that back in 2003, a vice president of Glaxo said that the vast majority of drugs - more than 90% of them - only work in 30-50% of patients.

      I wonder what the number needed to treat for amlodipine is. I was prescribed those after a routine visit to the surgery a few years ago. I guess my BP was high because of white coat syndrome as, when I check it at home with an Omron M6 machine as used in the surgery it is usually below 140/90.

       

    • Posted

      Just to note that current thinking by some researchers is that butter is better than Flora. Fats in the body may well come more from carbohydrates than from dietary fat, because blood glucose control is mainly Insulin pushing excess glucose out of the blood and into the tissues, often storing it as fat. So it is worth researching current dietary thinking - the 'low fat' movement may not be on the right track. A pet subject with me as I am T2 diabetic. Look up Low Carb High Fat.

      On Simvastatin, it reduced me to a zombie. When I found that I was having to lie down for a nap half way through the day I decided that this was ridiculous and stopped taking the statin. It was like a light turning back on, and I was alert again almost straight away. I 'Yellow Carded' Simvastatin and I would urge anyone who has had side effects to do the same. I don't think GPs report upwards on people stopping statins due to adverse effects so we need to try and get the side effects noticed and recorded.

      I switched to Pravastatin but that made me irritable so I am currently statin free.

      My total cholesterol is currently a little high, but I have higher than normal HDL (good cholesterol) so the ratios etc. are all O.K.

    • Posted

      Do doctors Yellow Card well known side effects on widely prescribed drugs? Years ago my wife had a very severe reaction to a medication. She asked her then GP to Yellow Card it and was simply told that it was a well known side effect.

      I had my first consultation at a Hypertension Referral Centre last week. Going through my medical history and multiple side effects many were listened to without comment but when I said joint pain from Warfarin he said that he had not heard of that before. I said that many people complain of it and it has also affected a neighbours joints and that her hair is falling out. That he agreed was quite common.   

      I mentioned that all the diuretics I had taken had given me pelvic pain and had reduced my urine output. I said that one consultant had suggested Spironolactone but it had never been prescribed.

      That one he said does have a lot of side effects!

    • Posted

      Whilst I'm sure a GP who says "it's common..." is probably quite right, unless everybody who suffers an adverse reaction reports them the data remains at the level of the clinical trials - where the companies keep the mentions at a minimum, some are never mentioned even when they are fully aware there might be a problem. Once a drug is being used in the general population the true rate of problems is seen - but it remains the underwater bit of the iceberg until they are reported using yellow cards.

      Not only GPs can do it - patients and pharmacists can do it too.

    • Posted

      Yes, the "experts" are now saying that saturated fat is not the demon they thought and that sugar may be more dangerous.

      i don't know what my ratios are, as I wasn't told.

    • Posted

      Well said grey cat.  A hospital consultant disagreed witih my GP some time ago when we were discussing dietary factors.  Both agreed diet was NOT the issue with me as I too am vegetarian and eat very little saturated fat, lots of pulses, beans, whole fibre etc.  My high cholesterol is familial, ie hereditary.  The consultant said, and I quote, "Don't eat flora or any other so-called cholesterol reducing margarine, they are manufactured and processed and will do more harm than good" He said to carry on eating butter, just make sure any saturated fat was eaten 'in moderation'.  A balanced whole food (ie not adulterated) diet is the healthiest route.
    • Posted

      Hi I have just started a low carb diet (+ Co enzyme Q10 ) to see what is does to my Cholesterol level, currently 6.11. Was 3.5 on atorvastatin (bad side effects) Statins discontinued 2 months ago. Will test my Cholesterol levels in a few weeks.

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