Statins - how do they affect you and my experience

Question: Is a level of 7.9 very risky not to take statins to lower it?

I have FH and for the last five years have taken statins which have made me feel very unwell and I have taken CoEQ10 which has helped with the side effects of statins. My latest experience is that I have twice come off statins as I felt that I would rather take my chances and feel better than take statins. I have always had a healthy lifestyle and diet, I run, go mountain walking, cycling but due to FH it does not keep my cholestrol levels down. I was on 20mg of statins and a certain brand which was just tolerable, but on reordering the medical centre chemist gave me a different brand which I had a strange reaction to. When I took the tablets back I was told they had run out of the normal brand I had, so I did not take anymore. Three months on statin free, I feel better and thought better check my levels which were 7.9.

I was called to see the doctor. He is a good doctor but does not really understand why I am having so much trouble with the statins he prescribes, but said that I would be better to go back on them. Again the medical centre chemist no longer had the original brand and gave me a different brand.and I have just started taking them, but this morning woke up with the pains in the arms and tingling in the fingers. I feel there is no real understanding of the issues people face who have to take statins because of FH, I do not want to take them but there is no other alternative. I have tried plant stenol tablets and other herbal alternatives to no effect. The only choice I have is to play russian roulette either take the statins or not and take the risks of stroke or heart attack.

6 Replies

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  • Traci - thanks for your reply - I have never had any specialist advice or tests, apart from the regular blood tests and appreciate that going to a lipid clinic might give me the answers to my questions. The FH was mainly in my brothers side of the family and was found when one of my brother's had a heart attack and FH was diagnosed and he died shortly after it was too late to save him. This was in the early 1990's when FH was just beginning to be understood and recognised as an inherited condition.

  • Hi Liz,

    Do you know if you definitely have FH? There are many different causes of very high levels. Like Traci, I am no substitute for expert medical advice but I tend to think that you don't "muck about " with FH as it is a known metabolic defect and very high risk. However maybe with other causes you could try other methods. I have been blogging with Tricia who has had amazing results with the Portfolio diet.

    I completely agree with lack of understanding about side effects and I think there are some people who are just intolerant of statins, the same as with any other kind of drug.

    Hope this helps, definitely ask for a referral to a specialist.

  • I think it all depends on whether you actually have been diagnosed with FH or not. If not - (and I've put a question elsewhere about this as I was surprised by the risk ), if you did a QRISK2 test ( qrisk.org ) assuming you don't have FH - then you'll get a 10-year CVD risk. If you actually have been diagnosed with FH (this means against the Simon Broome criteria - you can google this), then this assessment is invalid is this assumes people with FH automatically have a greater than 20% risk for CVD in the next 10 years and require treatment.

  • Hi, I have FH and see a specialist regularly, I do a lot of exercise and eat healthily, my level is usually around 8/9. Because of a healthy lifestyle my triglycerides are low and good cholesterol (HDL) is quite high, blood pressure is normal! The specialist said that although we need to control my cholesterol he isn't as worried because everything else is healthy, I tried statins and didnt like them, after a few different powders (fibrates) I am now on cholestogel tablet which will hopefully work, (I go on Monday to find out), I've had no side effects and it works by absorbing the bile in your stomach which makes your liver have to produce more, your body uses cholesterol to make bile (I think that's how it works??), it is different to statins as it doesn't go into your blood stream! Hope this helps, sorry it's a bit long winded x

  • Hi Liz

    Thanks for your blog, it's the first one I've read as I'm new to the site, but I really relate to your experiences on statins and your proposition of playing Russian Roulette. I've tried various statins in large doses and some combined with Ezetimibe over 10 years and have had to stop taking them 6 times due to the varied and awful effects I've experienced. Unfortunately, I have FH with a total cholesterol just reaching double figures. The 80mg of statins work well at lowering my TC, but make me feel so horrible I'd rather take my chances by living a healthy life and trying to reduce stress. I'm under specialist care and have stress tests, carotid doplar scans etc, but unfortunately am quite high risk due to a number of early deaths in the family history. I wish you all the best in your continued treatment and hope you find something that works for you.

  • Reading LizF's post has rung bells with me. Are we allowed to name brands here? My statin brand was switched just before I got my first lump (see my blog post). How much do statins vary between brands?

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