Should I take statins when I have familial hypercholesterolemia?

Hello there,

I'm not sure how this works as this is my first post but here goes!? I am 40 this year. My father died from a heart attack aged 62 and had cholesterol levels of 12-13. I have inherited this (along with my other siblings) and have cholesterol levels that range from 5-10 (10.2 most recently). I was diagnosed early (age 13) and have been on statins for over 15 years. I used to have a pin sharp memory but can hardly remember where I put my keys down now. I have read up a little about statins being 'the thief of memory' and I can definitely relate to this. I also have Hashimoto's disease (autoimmune under active thyroid) and adrenal fatigue (the last time Geneva Diagnostics tested me). I have had an underactive thyroid for over 10yrs but only found out that I had Hashimoto's a year ago.

I am concerned about taking statins long term as have read that it doesn't help women much in the long run and hardly adds much onto my life span and it's all a big con. I have also read that that cholesterol can actually be good for women and add to my lifespan.

The doctors repeatedly say that for normal women with elevated cholesterol I would have a point but they maintain that as I suffer from familial Hypercholesterolemia I should stay on them.

I would love to give them up if I could. Can anyone help me?

Many thanks in advance

24 Replies

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  • Blue Crest screening do a package, under £150.00. They do give an excellent report. Please goggle to check when is the next function near your are, just say you are interested in a general health check and see what you get in the report. I had one three years ago, the report gave red indicators in few areas, my life style change is helping me.

  • I suggest you google Dr Malcolm Kendrick's blog. He's passionate about his subject. You can join in discussions on his blog and I also think there is the opportunity to ask questions directly.

    Have you tried different types of statin? What do your siblings do and do they show side effects to statin drugs too?

  • Thank you I will.

    I was on Simvastatin 40mg for years which they increased to 80mg and then finally Atorvastin 40mg. Oe of my siblings I'm in touch with started on them much later and went on to Atorvastatin quicker. He has had mild heart problems but no idea what that is connected to....

    Don't think anyone else had much of a reaction but Iaven't talked about it in depth with anyone in the family to be honest so find it hard to answer your question.

  • I was curious to know if your siblings suffer too. Have a read of Dr Malcolm Kendrick's blog and let us know how you get on.

  • I had so many side effects and taken my self off them side effects went and I got my colestrol down my self

  • Just leaving a message on the blog now, thank you!

  • Good luck. I hope you find some reassurance. 🙂

  • Hi

    FH needs specialist knowledge. HEART UK - The Cholesterol Charity has a helpline you can access and lots of info on the website heartuk.org.uk. please do make contact for some support and guidance.

  • Three words.

    Plant based diet.

    I have yet to meet anyone who has genuinely stuck to it that has not eliminated high chol. And the need to take statins.

    Lots of research out there.

    Good luck

  • I'm not sure how to make that work for me. The reason I am reluctant is that I have a bad reaction to pulses, lentils, beans chickpeas etc (if you're even allowed that?). I get so incredibly gassy it hurts sometimes and I really don't think I could go to work due to the embarrassment, sounds silly I know but it's that bad! Does it have to be really strict and forever?I think protein is very important, what do you think about protein? Isn't a healthy balanced diet ok with a little bit of meat and dairy here and there or do I just have to go whole hog and try it to see how I feel? How long to start feeling better do you think...based on the theory it might be tough for the first few days/weeks/months, how long do I give it to feel a difference and see my stats improve do you know, so that I don't give up hastily? I appreciate the heads up and have seen the programmes about it and we were going to start it but never did....I know it helps people but am finding it hard to understand how I personally can do it when I can't take pulses (which I love by the way)

  • Dr Esselstyns books are a good start or watch Vegucated or Forks over Knives documentary. I can tell you I rescinded my own Chol from 6.3 to 3.1(total) in 8 weeks and eliminated all types of IBS symptoms, had more energy etc within weeks. Don't think of it as a diet - it's a lifestyle choice that not only improves health but is more compassionate, less costly to the environment and more economical! You will have to cook more because processed rubbish is out but it's worth it. The protein argument is simply a myth. Do some research - a plant based diet provides more than sufficient protein for our species.

    Best.

  • Ah yes, brilliant. I forgot that point from Forks over knives! I have watched that one by the way but look forward to watching Vegucated and getting the books. Thank you for taking the time with me to reply!

  • I agree 100%. On December 18 my world was turned upside down. I went for an annual exam and ekg came back abnormal. Cholestrol 234 & ldl 154. In following weeks I found out I have 100% blockage in circumflex & 30% - 50% in 3 other arteries. Since the physical I've been on plant based diet. My cholestrol dropped to 92 & ldl 29. My cardiologist put me on 40 mg statin. I've been reduced to 20 mg. Lost 20 lbs. All in 1.5 months. I'm non-smoker & very active. Have done a ton of research as this is scary shit. Plant base lifestyle is way to go.

    On a side note do any of you know of a way to lower lipoprotein (a)? My numbers high even though ldl dropped significantly.

    Also do you know if pb2 is allowed on ornish or essylton diet?

  • Excellent that you are on a life style change and the numbers are reducing. How do you feel as a person now days? Happy in life?

    We need cholesterol in our body for it to function, When is your next ekg? Is it echo or electro? (ekg)

    Take care.

  • I'm feeling good but honestly i was feeling pretty good prior to physical. Having a nuclear stress test in a month to make sure heart is recieving enough from collateral. if not may consider unblocking artery that's 100% blocked. Looking to reverse other blockages.

    The low cholestrol is a concern but your body makes naturally so fat from sources that increase risk aren't desirable to me.

  • Have you read Dr Caldwell Esselstyn MD's book, "Prevent and Reverse Heart Disease"? He is ex president Bill Clinton's heart consultant. Clinton began to follow his advice(mostly nutritional) after several conventional surgical procedures all failed. Google it. He is now fine on Esselstyn's diet! Get it from your local library - you won't look back!

    Best wishes, Chas

  • Thank you, I will get it!

  • Sweet-pea is right.

    In addition to the statins many people should make lifestyle changes to reduce the strength of statins taken. Too often the statins are portrayed as the be all and end all. Article in yesterday's Daily Mail about familial and also mentioned that 10% of people taking statins have problems with them.

  • Hello Hashi

    Sounds like you've got a lot on your plate there.

    First things first - have you had a genetic test for FH? If not, complain to the hospital and then your local CCG (clinical commissioning group), making it clear you will complain to the parliamentary ombudsman for health if they don't pay for one. You will probably find out they tell you to submit an individual funding request - as mine did - and will pay for a test for you.

    You're also only 28 if I've read your post right, but your dad had a fatal heart attack at 62? Was this a first heart attack, or had he had earlier ones? Generally speaking patterns of FH risk will run in families. Either way you're a long way off 62.

    It's worth reading Malcolm Kendrick on FH.

    drmalcolmkendrick.org/2013/...

    The risks of FH are HUGELY exaggerated by the medical profession. There are a lot of reasons for this, I think one is the make up of the NICE panel that drafted the guidelines.

    But it is quite simply myth that if you have FH you are bound to develop heart disease at a young age and die. There are some very unfortunately individuals who do have very high risk, but it's by no means certain. The speculation is that there are additional risk factors affecting blood clotting and other genetic factors which make the difference in risk. As well as the classic risk factors for heart disease such as smoking, high blood pressure, diabetes etc.

    Your average GP won't know that though because they haven't studied FH in depths.

    It is very very hard (I know from personal experience) to stick to your guns in the face of advice to take statins, and the inevitable fear from seeing your relatives develop heart disease. But why not try a half way house and reduce your dose to begin with? See how you feel?

    If you take a look at my posting history, I've also posted links to other studies on FH risk.

  • Thanks for taking the time to reply so fully to me. I'm far from 28 I'm going to be 40 later in the year! 62 doesn't seem so far off after I have just watched the last 10yrs whizz by in a flash!!

    I believe that was my father's first heart attack. He died in his sleep...possibly after physical exertion with an ambassadors wife...

    I don't think I have had a genetic test for FH no...I will into that one then....

    How can I reduce my Atorvastatin 40mg...would you recommend cutting it in half or missing a night every other night? They were thinking of putting me up to 80mg....will definitely resist this.

    I don't smoke now but I did for 18yrs unfortunately :(

    My blood pressure has always been fine. Never elevated so that's lucky.

    I had a genetic test that cost £500 to determine if I was at risk of heart disease and it came back low risk which was nice but I'm not sure that the genetic testing is that accurate at the moment and perhaps needs more time to develop I've been told?

    At the same time I had my cholesterol tested as well as an adrenal stress test which came back with adrenal fatigue and another thyroid test which came back with Hasimoto's.

    I'll check out your posts...cheers! :)

  • Hello, yes, you did say you are 40 - I assumed you'd been on statins since age 13, so added up 13 and 28.

    You could simply ask your doctor to prescribe a lower dose of atorvastatin if you want to reduce the dose - it does come in 20mg as well.

    There are a few trials which show that lower doses are more or less as effective as higher doses. Just say you want to cut down because you're having adverse symptoms. They may TRY to say oh no, you should be putting your dose up, but they can't make you take a statin at all.

    I've been subject to all kinds of fearmongering tactics, and I've responded by asking for the evidence a)of my risk and b) the benefits of taking a statin.

    Silence was the stern reply.

  • "I had a genetic test that cost £500 to determine if I was at risk of heart disease and it came back low risk which was nice but I'm not sure that the genetic testing is that accurate at the moment and perhaps needs more time to develop I've been told?"

    A test for FH (I've just had one done by the NHS after loads of argy bargy, and still doesn't have the results) costs about £1000 privately, so it won't have been a test for FH.

    I'd be very suspicious of any private tests.

  • watching now! Thanks! :)

  • In case of FH the excess cholesterol cannot be removed from the body. Taking statins helps to remove the excess cholesterol. Statins work by blocking the HMG-CoA reductase enzyme in the liver which is usually required to produce cholesterol. Your GP might have put your husband on the statins that suit him best. Most people with FH usually require high intensity statin therapy and are prescribed atorvastatin. Over a period of time if the cholesterol levels change then the statins prescribed by the GP might be changed. This also depends on the blood tests, any other medication and medical condition that your might have. Apart from the statins you can also try to modify your diet with the inclusion of fruit and vegetables and low saturated foods and regular exercises.

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