High cholesterol, very bad reaction to statins, advice?

Treatment and medication
1

I'm female and 64 years old. The last time I had a test for high cholesterol the total was 10.8. At that time I was overweight, a heavy smoker, had a high-fat diet and little exercise. I was prescribed simvastatin but in the night after taking the 2nd pill I woke up with breathing difficulties. My doctor changed to Lipitor, saying that had few side-effects. Within 30 minutes of taking the 1st tablet my face was numb and tingling, I had joint pains, just about every possible side-effect, all severe. So I was prescribed a new non-statin drug (forgot the name) but stopped taking it after reading research showing it caused narrowing of arteries. I was then given high-dose Niacin, in 3 months my total cholesterol had dropped by 0.2, triglycerides had dropped from 2.5 to 1 but HDL cholesterol had also dropped and LDL increased. At that time I'd just started a diet and exercise. I stopped the Niacin after reading that heart attacks were more likely to be fatal in 25% of patients taking niacin.

Since then I've lost almost 3 stone, exercise regularly, have a low-fat diet and have cut my smoking from 50 a day to 5 to a maximum of 10 a day, using ecigs. I have no idea what my cholesterol is now as my Dr says there's no point testing if I'm not taking drugs. When I was younger and total cholesterol was 6 he said there was no need to do anything. My GP is due to retire soon and his replacement would try every available statin in the hope that he finds one I don't react to. I hope my levels have improved due to lifestyle changes plus eating a lot of porridge oats and having Benecol daily.

Because my total cholesterol was so high 3 years ago, should I try to find a statin I can take? I have normal blood pressure but it is very difficult to find a vein that will let anybody draw blood, the reason, I think, why my GP has done no more tests. He has to draw blood from my foot, no other Dr is likely to, and phlebotomists just can't find decent veins.

2

Hi Susie

firstly let me congratulate you on losing 3 stone, an amazing achievement.

Please stop using Benecol it is a complete nonsense like all food or drinks that claim they lower cholesterol, that's probably why your HDL lowered and LDL increased.

You are now losing weight, exercise etc so you're going in the right direction, in my opinion there is absolutely no need for medication.

A low fat diet is also not good as all products claiming to be low fat are actually full of sugar. There's research that has been carried out that shows limiting saturated or animal fat from our diet increases LDL and lowers HDL that could be whats happened to you.

lots of people make the mistake of using veg, sunflower oil which are processed and are extremely bad for us, use animal fat like Goose or Duck. I actually cook everything including frying with extra virgin Olive oil, it's the healthiest oil to use.

Finally I'd like to advise you to lower your carb intake, you should actually eat more animal fat than carbs, following this way of eating does lower cholesterol.

I'd suggest following the above as soon as possible then when it's time to visit GP and a cholesterol test is organised you'll find you shouldn't need any medication.

If however your new doctor suggests any form of statin then stand firm and refuse, it's your body and it's obvious statins aren't for you.

Some of what I've said maybe controversial but I have been exactly where you were and after lots of research I've now come to know Cholestrol is not evil and does not cause heart disease.

I have never felt healthier than being off Statins and my Cholestrol level dropped from 7.5 to 4.8 doing the above.

Goodluck and keep us posted on how you're doing

Sonya

 

3

Totally agree with everything that @sonya10 says (except for cooking with olive oil..a big no no as the mono-unsaturated fats are very easily damaged and produce free radicals that cause inflammation that in turn causes your body to produce more cholesterol to repair that damage [like fibrin /scabs on external damage / inflammation]).

Use heat stable saturated fats like coconut oil and keep olive oil for salad dressings.

Personally I think statins will prove to be the biggest and most damaging medical scandal in history. Even bigger than the Vioxx scandal that killed over 60 000 people and cost Merck $4.85 billion in damages and an additional $950 million to end a US government investigation of the drug’s marketing practices plus an additional $23 million last year.

I notice today in the news that big pharma influences are leaning on the British Medical Journal (BMJ) and the researchers that published a damning report on statins to get it withdrawn. (possibly threatening to do a “Wakefield” type stitch up on them).

The trouble with the modern allopathic medical system is that it is more interested in turning off the smoke alarms than putting out the fires. (a pill to mask every ill, instead of prescribing a healthy diet and life style {not the one currently suggested though} )

4

Coconut oil is best but an acquired taste. 

As far as olive oil being heated it's been researched thoroughly recently and it's now been found that Olive oil does not become damaged when heated, infact it maintains it's purity.

I'll dig out research and post here when I have more time 

5

Sorry did forget to say extra virgin olive oil should only be heated to 200 no higher as it could smoke and that will cause damage

6

Dear Susie,

I agree with Sonya in lowering the fat in your diet, this is definitely in the right direction. 

However, this is where it ends, because statins are a good thing. They save lives, not one piece of evidence says they don't. High levels of Low Density Lipoprotein (whats known as LDL) cholesterol block arteries and cause heart attacks, again, there is no evidence to says it doesn't. Cholesterol does perform good functions, of course, but everything in moderation.

Statins act to bring your cholesterol level down to a healthy place, and are excellent at stopping heart attacks from occuring. They do come with a very limited number of side effects, but which drug doesn't? At the end of the day, you will need to make the decision, whether to take a gamble with heart attacks and, sure perhaps some side effects, or find a statin that works for you, and live a longer life. At least try some of the others, nobody can say it won't work until you've tried it!

Finally, (and I'm suprised nobody else has said this), make the final push and stop smoking! Your health and life will be so much better without them, and if you could see what happens to your lungs every time you smoke, it's truly phenomenal the industry still exists. 

Please reply with any more questions,

J

7

I didn't get minor side effects from statins. Having great difficulty breathing after taking one is not monor, and after trying a second statin that had even more violent side-effects my GP decided they were too dangerous for me. 1 in 10 people just can't take them due to dangerous side effects and it appears that I am one of those people. I know that almost everybody over the age of 50 (and getting younger) are taking them and most have few or no side effects although they do need regular blood tests to check that the muscles aren't damaged too badly.

As for giving up smoking, unfortunately I discovered electronic cigarettes and did so two months before the EU draft directive that will lead to a de facto ban in them began. I cannot stiop smoking using any medically accepted method and tried so many times that eventually I gave up giving up. I did manage five days without smoking when I tried cold-turkey, I ate and knitted instead (I can't knit) then I ran out of wool. Ecigs have been a miracle for me after iver 50 years of smoking up to 50 a day and I had managed to stop smoking completely with them, but when I learnt that every ecig that worked would be banned I started smoking a few cigarettes a day because most people who switch to ecigs fing the taste of real ones disgusting. I wish I could have carried on not smoking at all and maybe, although I have no intention of giving up vaping, I could have stopped smoking completely.

In spite of the Tobacco Control brigade's unscientific fear of people enjoying stopping smoking with 3rd generation 'ecigs (not electronic or cigarettes or medicine) that caused me to smoke a tiny percentage of those I smoked a year ago, I am healthier, breathe better and both my resting heart rate and blood pressure has dropped, in fact my doctor tells me that, providing I keep my gym work up, I have the heart rate of an athlete now. I do not think that anybody is unaware of the harm caysed by smoking but the only country that can prove that providing a low-risk alternative cuts smoking rates and stops all smoking-related disease. That is Sweden and the use of snus, which is banned throughout the EU, has cut smoking there to 13%, possibly the lowest in the world. Why ban snus and electronic cigarettes when smoked cigarettes are almost encouraged. Obviously pharmacuetical companies want no far safer alternative to smoking because they lose profits. Stop-smoking medication and people contacting stop smoking services have dropped by as much as 30% and cigarette sales have dropped by almost 8% while ecig use doubles every year.

I suspect that my LDL cholesterol has dropped considerably but I'm unable to get a fasting blood test  .

Statins can bring your choleterol down too far and  I know that they are seen as a cheap wonder drug but there is research that says this is not neccesarilly true. I have such a violent reaction to them that my muscles aren't at risk, but the heart is a muscle. I have a friend who is taking medication for high blood pressure and choleterol who has had a TIA and a heart attack while taking drugs intended to prevent them. Both my parents died from drug-induced disease and I have a strange reaction to a number of drugs. I know that I cannot take beta blockers, statins, anti-histamines or PPIs although I can take the muscle relaxant, pain medication and cox 2 inhibitor prescribed for back problems.

With a background that includes a degree in biochemistry I have met doctors who know a lot less than me on some specialist subjects. For example a third of GPs believe that nicotine is the carcinogen in smoke when in fact there are many carcinogens in burnt tobacco but none in nicotine.

I am afraid that when you mentioned smoking you hit a nerve as I have been campaigning to reduce smoking for over a year using the only method that works even with people who have no wish to stop, while the EU passed a directive that is intended (bit won't) reduce smoking by 2% whilst practically banning something that has eother stopped or reduced smoking in 20% of smokers so far, and is estimated to cause 105,000 deaths a year and increase both smoking and a new black market.

 

8

Everyone is entitled to their opinion and I welcome yours, but I really feel the necessity to clarify I few points you've made.

Firstly I did not say ' low fat' is good, I actually said the opposite.

I'd also like to address our differing views on Statins if I may as I believe this will help Susie make an informed decision on how she manages her own health regarding Cholesterol and Statin medication.

There are more patients suffering from serious not ' limited' side effects from all Statins which ever brand they use. Depression, myopathy, suicidal thoughts, Memory loss, permanent joint and ligament damage, this is just a few that come to mind there are many more. I honestly cannot understand how anyone could continue taking a drug that causes any or all of the above, quality of life is surely more important than extending your days in agony?.

I think the real question we should all be  asking  is " where's the study or proof that Statins prevent heart disease"? There are approx 50 million people in US alone that take Statins yet their heart disease figures haven't  lowered since the introduction of Statins? Neither has the UK's it's still our No1 killer, why haven't we seen a drop in heart disease by now? Statin medication has been around for approx 15 years.

Cholesterol does not cause heart disease, anyone who understands exactly the role of cholesterol in our body will know it's not evil but essential. The reason doctors and other medical professionals ( not all thankfully) believe this hypothesis is thanks to one man Ancel Keys who began this whole Cholestrol myth by falsifying his data.

The reason Cholestrol is found in arteries is simply, it's there to repair a tear or inflammation, basically like a band aid, if more damage occurs then once again Cholestrol tries to repair it. So in reality It could very well  prolong your life, without it your artery would have been to weak to continue, Cholestrol is the glue to fix it. 

As Dr Dwight Lundell once said 

" Treating cholesterol with Statins is like waving the smoke away from the fire and thinking that you've put it out"

sorry Susie for going off topic, it's just I'm so passionate about the truth coming out re Statins and Cholesterol.

I think you'll find Dr Malcolm Kendrick's book " The Great Cholestrol Con" 

It's written so us laymen can easily understand :-)

The choice re Statins is completely yours but I'd like it to be an informed decision.

 

9

Sure I'd be happy to address them. If you could quote your sources though so I can read them myself from now on, and like that I'm sure we'll agree far quicker, and I'll do the same. Obviously no web pages!

So first, the side effects: you say more patients suffer from serious side effects? Where is this data from, since as I'm aware, the most common side effects observed in a long term, large scale study is myalgia (Atherschlerosis, 209 (2010) 189-194). The side effects you mention have been reported in a select number of cases, but no study has implicated them as the rule rather than the absolute exception. Please remember that the biggest reason for patient non complience is reading forums like these, and posting those side effects without proper sourcing or jusitification is irresponsible. Don't forget the disaster of the MMR vaccine, and how one doctor taking bribes and poor reporting lead to a nasty disease affecting children needlessly.

Secondly, heart disease, if you take a look on the World Health Organisation website, the mortality has done just that, drop. In the UK, the 3000 people still alive each year compared to 1980 probably thank modern medicine.

As for statins particularly, I quote from Lancet (2010), 376, 1670-1681, reporting a meta-analysis of 170,000 people from 26 different trials: "Further reductions in LDL cholesterol safely produce definite further reductions in the incidence of heart attack, of revascularisation, and of ischaemic stroke, with each 1·0 mmol/L reduction reducing the

annual rate of these major vascular events by just over a fifth. There was no evidence of any threshold within the cholesterol range studied, suggesting that reduction of LDL cholesterol by 2–3 mmol/L would reduce risk by about 40–50%."

As for the link between cholesterol and heart disease, found some nice papers

British Journal of Pharmacology, 158, 1495-1502, that demonstrated hyperlipidaemia reduces a type of cardiovascular protection mechanism. Also Circulation Journal, 17, 12, 1845-1850, where maintaining low LDL-cholesterol levels using atorvastatin prevented the growth of atherschlerosis.

Obviously cholesterol plays functions, the issue is that as a Western culture, we consume too much, to the point that intervention becomes necessary.

As for Dr Dwight Lundell, interesting you quote a man whose medical license was revoked in 2008 for poor patient care and a technical surgical error... Doesn't seem like the kind of person I would trust with my continued safety...

10

Can not help but wonder if j42452 is a pharma troll or are they just a member of the sheeple who swallows everything that the (bought and paid for) lamestream press put out.  They are obviously a believer in the religion that is called "vaccination".

11

I am more than happy to quote any sources I use and I assure you none of mine have been or are internet based.

firstly I'd like to address the heart disease and mortality figures. I should have been more specific regarding my interpretation. I accept that heart disease figures over all have slightly declined, due to anti smoking campaign and more importantly it's due to high tech surgical intervention which is an accomplished miracle of restoring blood to threatened or damaged organs but the prevalence of progressive arterial blockage remains largely unchanged.

As far as statin side effect studies that show my points I have just a few this is simply because independent studies have to be hugely financed and where will they get their funding?..... Certainly not from the drug companies.

i will quote two studies one is a massive ( and never remarked upon) statin trial in Japan the J-LIT study found a significant increase in death from cancer with people given statin. 

The PROSPER study - one of the few statin trials specifically carried out on older people, there were 24 more cases of cancer on statins than placebo, 12 cases of breast cancer in statin group against 1 in placebo.

This isn't definitive proof that statins cause cancer but it is something that should be monitored rather than ignored, especially as early statin trials caused cancer in animals.

When questioned about safety concerns those who defend statins repeatedly and enthusiastically point to the low incidence of adverse side effects reported in controlled randomised clinical studies, as you have done.

the studies you pointed out claim that it's clear that stains are safe, effective and well tolerated drugs, As proof of their alleged safety among the general public the clinical trial experience with statins is next to useless.

Why?

Because when researchers recruit participants for statin clinical trials they carefully screen for and exclude a wide range of individuals, including women of child bearing age, those with history of drug or alcohol abuse, poor mental function, heart failure, cardiac conditions, liver or kidney problems, cancer and any serious illness and most importantly the remove people with ' hypersensitivity' to statins. These trials exclude groups that comprise a significant proportion of the population and can hardly be taken as a realistic barometer for the expected incidence of side effects in the general population.

this sort of screening is usual with clinical trials so it's little wonder that 50% of prescription drugs are subsequently found to have serious adverse side effects not detected prior to regulatory approval.

The clinical experience with statins has been far from trouble free. Data from the largest statin trial , the Heart Protection Study (HPS) suggest that the daily 40mg of Simvastatin used was nowhere near as well tolerated as the authors would have us believe. A substantial number of patients did not enter the trial after a six week run in period on Simvastatin before randomisation, of the 32,145 who participated in the run in phase, 11,609 patients which is over one third dropped out before official start of trial. 

The ALLHAT trial did include populations that had be screened out of all other trials, By the 6th year 23% of its participants stopped taking Pravastatin, half didn't specify why while the remainder cited ' adverse effects'. Unfortunatley we will never know the exact type and frequency of side effects among ALLHAT participants as specific adverse side effects data was not collected during the study. 

I could fo go one but I'm sure my sensible logical argument will have no effect as you'll undoubtly come back asking for more info whilst telling me you have all you studies and quotes.

I'm sure we will have to agree to disagree but I would like to suggest you do use the internet to google the name ' Ancel Keys' this is the man who began these lies re cholesterol through his false data, I'd also like to recommend a book by Dr Malcolm Kendrick ' the great cholesterol con' and if you have free time please watch ' statin nation' 

I do not mean to come across in any way belittling or patronising, I firmly believe that you really do feel that stains are a miracle drug and cholesterol is evil, that is your opinion, just as I have mine.

i once thought exactly how you do but I've researched and read numerous books and have been enlightened and empowered to take my own health and life back.

12

http://www.independent.co.uk/life-style/health-and-families/health-news/statins-row-critics-are-biased-says-doctor-who-warned-of-drugs-sideeffects-9388337.html

interesting read

13

Forgot to mention I'm in Sunday Times today, just a small piece that relates to statin side effects. Journalist wanted to hear from both sides of the debate, those who've suffered side effects and those who think they're great. 

Funny how the only person in article who has taken statins and has no side effect is a doctor.

just call me cynical

14

I was wondering that as well. For many years I've followed the immoral (at least) actions of the pharma companies and my eyes have now been opened wide by the pharma attempts to remove the most promising way for people to stop smoking because it isn't a pharma invention, it now works far better than any pharma method and is losing pharma companies a lot of money. I've been a researching electronic cigarettes for almost two years and found a 2008 impact statement to the EU complaining about them, asking for the law to be changed because they are not sold as medicines (because they aren't) but are more popular and more effective than any pharma product. Pharma stated that the law should be changed because they were sold for far less than any other NRT, had no costs associated with obtaining medical licences, and pharma wanted a 'level playing field'. We have that now, or will soon and that will cause deaths. So I learnt that profits are important and lives are not. I also learnt that most research is funded by pharma or organisations largely funded by pharma with the understanding that the results of the research will show the advantages only of the drug being developed.

For that reason it is difficult to find genuine unbiased studies but a few do exist. So when I was prescribed a new anti-cholesterol drug called Ezetimibe I looked for studies. There were hardly any that were available to the public, I assume most were pharma research that was kept secret, but I did find one Australian study. The conclusions were that this drug lowered cholesterol but it also caused narrowing of arteries. The study measured neck arteriies and they showed considerable narrowing in those taking the drug compared to those taking a placebo. It also had the side-effects of reducing cholesterol to a large extent that exist with statins such as muscle weakness and even destruction of muscle cells.

As for all drug trials, those who take part are selected to be the most likely to react well with few if any side-effects. I have the figures for trials of drugs to stop smoking, but the same applies to all drug trials, they don't reflect real-life use. From NRT trial data, 50% using NRT were reported as successfully quitting smoking. In real life that figure is between 5% and 10% if behavioural councelling is also used. Thise figures show that the efficacy of NRT is no greater than will-power alone and in fact will-power has a greater efficacy, but pharma would never admit that.

I believe that pharmacuetical compnies have too much involvement in health policy. The MHRA, BMA, NICE, DofH, all departments, quangos, NGOs, etc take policy advice at the very least from people who work in pharma. The MHRA has a 'revolving door' where people move from pharma companies to the MHRA, then back into pharma. The same is true globally and is known as Regulatory Capture.

Jumping yet again, the best researcher I know, a reasearcher in cardiology, has great difficulty obtaining funding because he makes a condition that he will publish his findings even if they are unfavourable to his funders. For that reason recent research has been crowd funded. That is, research into a drug is funded by people who take the drug, have the condition or are concerned about either. The funding is obtained through crowd-sourced funding internet sites. He has been funded by concerned industries in the past but one recent paper into ingredients that were used only for flavouring, he found that 69% of flavourings contained toxic ingredients that could be removed. The hope is that the flavour manufacturers will change their ingredients to safe ones now that the toxic ones have been found, but no industry body or company would have funded research that could have such an outcome.

We need honest researchers and all studies and research published online under an open licence. It has been proved that where profits are involved, companies bury bad results and cherry-pick both trial subjects and results.

 

15

I have noticed that older people are more likely to have higher cholesterol. Could this be a way that the body protects itself from damage caused by aging?

I have also observed that the majority of over-60s have been prescribed statins and those I know (apart from myself) say they have no side-effects. I tend to question that as most suffer from muscle weakness and pain which they think is caused by their age. These people tend not to read the leaflets included with prescriptions that list side-effects.

I do read those leaflets, which is why I knew that the difficulty I had breathing after taking only two simvastatin tablets was listed as a very rare side-effect. Breathing is important, so I did as the leaflet advised and contacted my doctor, who told me to stop taking them immediately. Unfortunately I was then prescribed Atorvastatin, being told that it was regarded as producing the least side-effects. Within 30 minutes of taking a single tablet my lips were numb. I still suffer muscle paons and I only took a single tablet over 2 years ago.

The fact is that some people are alergic to statins and some are hypersensitive. I am one of those people and, apart from the well-documented side-effects of long-term use, I believe that I am one of the 10% of people who cannot take statins. There have been attempts to find non-statin alternatives, and I am able to take them, but I have found research that points to not taking cholesterol-lowering drugs to be the safer oprtion. The alternatives have been found to cause considewrable narrowing of the arteries, for high-dose nicotinic acid, 25% of all hear attacks being fatal, plkus the long-term side-effects identical to those of statins that appear to be caused by reducing production of cholesterol and other proteins and enzymes by the liver. The drugs that prevent the absorption of dietary cholesterol, well, that has been proved to make little difference and can be acheived through diet.

It is true that there is a lot of misinformation online, but that is found everywhere. Adults have the right to choose what they do ir decide not to do and that choice should be an informed choice. That is one reason why pharmacuetical companies should release all of their data. None can claim commercial confidence on old drugs that are now out of patent such as many of the statins.

I do not have blind faith in any person or any body, including the BMA, which is just a trade union. The number of people who want proof rather than faith increases daily, so I would like to read original research from pharmacuetical companies rather than the millions they pay to the familes of people killed ir disabled by one of their drugs in order to stop those families sueing.

 

16

Hi Susie you are correct older people have higher cholesterol because it is indeed protecting them from the on set of age.

How much cholesterol we produce is governed by whats going on in our bodies, if we have any form of infection, inflammation or weakness our cholesterol rises, which contrary to popular belief is a good thing.

When elderly statin taking patients visit their doctors complains of aches and pains they're told it's age related. Doctors even get away with saying this to 40 year old patients.

i advise anyone being advised to take a statin to ask they're GP " what is exactly is cholesterol?" I have yet to meet a statin loving doctor answer this correctly, works every time 😄

17

Hi SusieC, I think you should find another (younger) GP if he he won't test for cholesterol. I would have thought that there every reason to test if he doesn't know what your cholesterol is now. Looks as though he can't wait for retirement.

18

http://www.heraldscotland.com/mobile/news/health/urgent-review-as-nearly-half-of-health-boards-ignore-pharma-disclosure-rule.24250959

19

Hi Marco. It isn't the age of my doctor that makes him reluctant to do blood tests, as with many GPs these days, he's taken partial early retirement. He sees no point in checking my cholesterol level if I'm taking no medication. If I was taking statins he'd arrange a double appointment with me and the phlebotimist who would watch while he took the blood. He is very good at finding veins because he worked in a hospital paediatric department. But a blood test for cholesterol would just give a comparison between now and a few years ago. I can't take statins and there are no safe drugs that work reasonably well available now.

I also know the reason for linking low cholerterol with low heart attack rates. A village with far lower rates of cardiovascular disease that also had a population with low cholesterol. Another remote population was found later with the same cardiovascular disease profile only they were found to have high cholerterol.

I am one of those who can't tolerate statins. I also have very small, deep veins and I have spent too long being shuffled between GP and hospital phlebotomists and back because they have limited time, are only allowed three attempts and not permitted to try to take blood from unusual places. True, the hospital does have equipment to find viable veins but they don't use it for routine blood tests.

A younger doctor who doesn't know me might try to put me through the hell of statins and I might be tempted to try yet another, but each type causes a more violent reaction than the one before. Also I have seen no research that proves that statins really do help. I know that far more people survive than in the past but they still have cardiovascular events, but treatment is much better now.

 

20

I like you have bad reaction to every different statin I've taken and have been off Atorvastatin for about 3 months following serious thigh muscle pain. The pain stopped as soon as I gave up statin. Had I seen the practice head instead of a more junior doctor he probably would have changed my statin which he's done over a ten year period. I find that all statins reduce my HDL below the safe limit when my LDL level is ok. I will have a cholesterol test this week.

It is not acceptable for your doctor to deny you a blood test when he doesn't know what your cholesterol level is?  If he can't take blood he should refer you to someone that can.