High cholesterol - unsure about statins - can anyone tell me their experience?

[PunishmentRoundupWithJoon]

Cholesterol has been consistently high for well over 10 years. Never gone higher than 7.5, occasionally drops into the 6's. Obviously the GP's have suggested statins many times but I've always declined, imagining I could reduce it myself (not my most successful endeavour...)

I'm not against statins, just concerned about the side effects - I've read that some people can have less energy and muscle pain when on them. I already suffer from ME so fatigue and muscle pain is a part of my life and I don't relish the prospect of being even more knackered and achey. Obviously I realise that high cholesterol is not great and would love to see the figures dip into the 5's (I'd be happy with that).

Can anyone give me their experience of statins? Did you actually find that you felt fabulous whilst on them? (clutching at straws here).

Thank you in advance.

@Rummikub - Liver cells have HDL receptors on their surface anyway. The general purpose of these two types of lipoprotein is that LDL carries cholesterol from the liver to tissues and HDL carries excess cholesterol from tissues to liver, where it is used or excreted in bile, so the balance between them determines how much cholesterol is deposited in tissues. Because the purpose of HDL is to carry cholesterol back to the liver, there are always receptors available in the liver to capture it.

@NoNotHimTheOtherOne

ah thanks. Thus makes sense. And I do feel more reassured now about taking it.

Interesting, did the pharmacist say why? I take mine first thing.

My husband has had a couple of small strokes and TIAs so really needs to keep cholesterol down .He had leg cramps with the first couple of statins but now takes 5mg rosuvastatin on alternate days which has been enough to bring his cholesterol down .

The enzyme that makes cholesterol is more active at night so taking statins at night makes them more effective.
Some statins are better at night, like simvastatin because it has a short half life but some like atorvastatin have a longer half life so they can be taken in the morning.

Thanks for all your input - it seems many people are taking statins with no side effects. Probably worth giving a go. I told the GP I'd give it six more months to see if it can go any lower. If it's lower in six months then I'll keep working on it. If not, will probably try a statin.

It might be high, but I was really pleased that it was 'only' 6.8 this time!

Thank you for this, I will change my habits!

I am in same situation. Recent cholesterol level was in 6s
I had managed to reduce it slightly from the test before, but GP says not enough
and suggested I would not be able to, as family history.

I too am reluctant to go on statins due to side effects as I already live with daily
pain. However I am approaching the age my father had his first heart attack and his cholesterol was extremely high. [Mine are a lot lower at the same age.]I have put off starting them, but may reconsider after reading some of these reassuring posts.

Mine for a while has been as high as 7 but usually 6 point something. The consultant has done a test which has said it is familial. My mother had it too. I explained my food intake and the consultant said based on that alone it should not be high. Mind you one of the medications I take could be making it a bit higher too the doctor said.

My GP keeps suggesting it but mine is more hovering lower - depends on what I have been eating to be honest. I try to have porridge in the am and take plant sterols EITHER from H&B or Benecol which is a lower dose. SO long as I am not eating massive meals with plenty of meat seems to come down so after christmas its often high so need to just adjust diet and take sterols. But as I said mine hovers around acceptable

I have familial high cholesterol. I have been told at the moment that my age and oestrogen will protect me enough to not need medication, and I am conscious of the things I eat, my weight and exercise. There will come a point where I will have to have medication as there is no other way to control it. My grandad died at 62 from it so obviously I am keen to stay aware.
If you don't have familial HC then I would personally be making dietary and exercise changes, especially when you are concerned about taking medication. If you are concerned enough about popping pills, then you should be concerned enough to make an effort with your lifestyle.

This has been a very useful thread for me. My GP wants to put me on statins as I have familial high cholesterol but I've been resisting. I think I might agree having read this.

Please listen to your GP @DramaAlpaca. My friend's DH had a cardiac arrest as a result of FHC.

I should add a bit to my previous posts. I don't want to give anyone the impression that statin treatment doesn't carry any risk. All drugs have the potential to cause harm. There are absolutely no exceptions to this.

There are readily accessible lists of contraindications, cautions and side-effects of statins (see, for example, www.medicines.org.uk/emc/product/4339/pil#gref). However, most people's concerns tend to be about muscle pain, which has received a lot of publicity. This has never been as common as people believe, and a recent study suggested in many cases muscle pain isn't actually due to statins. There is a very, very small risk of a severe muscle condition called rhabdomyolysis and also (as for quite a few drugs) a risk of reduced white blood cell production. Prescribers must be on the lookout for these, as, although the risk is tiny, if they are treating thousands of patients there's a possibility they will see them. The risk of rhabdomyolysis is associated with higher concentrations of statins, and these might occur as a result of drug interactions. So, for example, if you require a macrolide antibiotic such as clarithromycin for a chest infection, your statin would usually be stopped for a week while the infection is treated because clarithromycin greatly increases the plasma concentration of many statins.

Thanks @RampantIvy I will

I’ve been on Atorvastatin 80mg for 3 years with no side effects.
However, I have made sure to take a magnesium supplement and CoQ10 supplement to ward off potential side effects.

Some years ago my Total Cholesterol was over 11 so I had a blood test for Familial Hypercholesterolemia (FH) which was negative. A doctor cannot say for certain you have Familial Hypercholesterolemia without you having a blood test.

So I decided to do a lot of my own research.

We would die without cholesterol. About 80% of the cholesterol in our bodies is created by the liver and has nothing to do with diet. Generally if we eat less cholesterol our liver makes more and vice versa.

It turns out my GP like others in the UK is about 20 years out of date with his knowledge - talk of good HDL and bad LDL cholesterol is way out of date. HDL is good, LDL can be either good or bad - large fluffy LDL is good, small LDL is less good. In some countries like Australia they do more advanced cholesterol tests such as LDL-p which determines the size of the LDL particles; large LDL = good.

Normally your cholesterol is recycled by the liver: created by the liver, used then returns to the liver. But it turns out that about 25% of people have a genetic anomaly (one that is different to FH) called LP(a) - this means the cholesterol that the persons liver creates cannot be recycled - and so it builds up (especially the small LDL particles that have been used).

It is really hard to get an NHS test for LP(a) but you can get a private test for it more easily. NHS won’t tend to test for it as there is very little in the way of drugs they will prescribe for it (PCSK9 Inhibitors are expensive).

So statins for LP(a) people remain a big blunt mallet type hammer to use in our backwards little island until our NHS catches up with more advanced nations.

The upshot for LP(a) people is that it may be better for them to take a statin to reduce the cholesterol the liver creates but not skimp on the dietary cholesterol that doesn’t have the LP(a) anomaly.

In addition, the body absorbs cholesterol through the same mechanism irrespective of if it’s liver generated or eaten and some people are hypo absorbers and absorb less cholesterol and other are hyper absorbers and absorb more than others - this is genetic variation.

The better medication for hyper absorbers can be Ezetimibe - many people who should be on Ezetimibe are on statins instead (ezetimibe blocks cholesterol absorption whereas statins reduce cholesterol production/synthesis). Of course if cholesterol absorption is blocked the body will try to make more cholesterol instead and if cholesterol synthesis is blocked the body will try to absorb more instead. So often people should be on a low dose statin and low dose ezetimibe.

Obviously hypo absorbers can eat all the cholesterol they want and have no issues.

Some might find this useful:

Does anyone take statins who also have hypothyroidism?
I have read online that you are more at risk to have the muscle issues if you
have hypothyroidism and more at risk of the rhabdomyolosis mentioned in
@NoNotHimTheOtherOne post. Any one have any experience of this.?

If you have a diagnosis of ME and cholesterol high enough to make your GP uncomfortable, I would suggest you get a full thyroid test, privately if necessary, and look at your FT3 level.

Higher cholesterol is often caused by thyroid malfunction. When that is fixed, cholesterol levels reduce. Also, a lot of people with an ME diagnosis have a thyroid problem which does not show up on standard NHS testing. This happened to me some years ago.

I don’t have a thyroid so technically I guess that makes me hypothyroid? But obv I take thyroxine so does it depend on your medicated levels?

Just coming back to this as just had my cholesterol checked for the first time since starting statins almost 2 years ago. It was 5.2 which is normal/average and it's now 3.4 so I'm over the moon with that. Well worth it as I'm at high risk of heart disease and vascular dementia.

@CornishGem1975 - that's fantastic! That's a great level of cholesterol - I'd be thrilled if mine was similar! Mind you, I'd be thrilled if mine was 5.2 at my next check. You must be relieved, given your risk of heart disease. Am chuffed for you 😊

I have familial hyper cholesterolemia - my uncle died at 54 and following that my dad was diagnosed and put on statins at 45, I was tested and diagnosed in my mid thirties and have been on statins for 15 years (most recently simvastatin). I haven’t had any side effects.

Years ago a previous GP recommended a statin; I took it and within had muscle cramps so gave up Can't even remember which one it was.

Fast forward to 2 yrs ago, new GP practice recommended statin and I said I was unwilling because of precious experience. The Dr replied " Lets see if there's one that suits you better. " I've been taking 20 mg daily of Atorvastatin ever since with no side effects at all.

previous experience.

Thanks all, very interesting information. I'm nearly 72 and with a cholesterol level of 6.8.My first cholesterol test showed my levels were 8.3. I tried with diet exercise and plant stanols, which brought it down to 6.This test however, my doctor suggested a statin so I took my first one last night. 20mg Atorvastatin. It's good to know that most people on here haven't had any side effects. We have heart disease in the family. Apparently my HDL is high so that's reassuring. I have to take these for 3 months then have a further blood test.