A few years back I was was started on Simvastatin as a random blood test showed that my overall cholesterol was in the 7s. Some time later my GP changed this to Atorvastatin as my cholesterol remained high. I then developed terrible anxiety, which everyone said was unrelated to the Atorvastatin, but it is recognised that statins can cause nightmares (which I suffered badly from), so it's a no-brainer that the anxiety was related to this. I came off the Atorvastatin and my anxiety resolved.
Some time later, I was diagnosed with possible familial hypercholesterolaemia after a look at my family tree showed that a number of relatives have died young from coronary heart disease. I was seen by a consultant cardiologist who said he wanted he wanted to start me on a more potent statin, Rosuvastatin 40mg. He said he would like to see my cholesterol at around 2 (the consultation was rushed and I didn't question him as to which cholesterol he meant - total cholesterol, LDL or what). So I started on Rosuvastatin 40mg and was fine for the first few months, then the nightmares and anxiety returned. I came off the Rosuvastatin and the anxiety resolved, but my cholesterol shot back up. I started back on Rosuvastatin 40mg on alternative days and I'm suffering from nightmares, low mood and mild anxiety, so not as bad as before, but still unpleasant. On this dose my Cholesterol results are on the upper end of normal. Results as follows:
Total Cholesterol 4.54
LDL Cholesterol 2.47
Non-HDL Cholesterol 3.1
HDL Cholesterol 1.44
Total Cholesterol: HDL 3.15 ratio
Triglicerides 1.38
I appear to be very sensitive to either statins, or having low cholesterol (I read somewhere that lowering your cholesterol beyond a certain point can cause psychiatric side effects). Is there any way of lowering my cholesterol to a healthy level, without taking statins? Can anyone offer me any advice please?
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Judthepud
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Some years ago I was advised I should go on a statin but took no notice and I tried to get it down myself but never could but then high cholesterol heart attacks run in my family
Eventually I had 3 heart attacks and a triple Bypass and often wonder had I taken the statins when advised I should would I have ended up having the heart attacks and Bypasses I shall never know
I suffer with anxiety in general already and my anxiety has got worse if it is down to the Statin I have never really given it any thought but I know I would not stop taking it after what happened
I think you really need to sit down when you can with your Doctor or Consultant I know it is not easy to get appointments but keep trying and see if there is any other Statin they would be happy to try you on but in the meantime I would personally not stop taking them mess with the dose till I had spoken to them and I know this will not be easy for you but I would hate you to be sat one day and have the " What ifs " I now have from not taking the Doctors advice
There are alternatives to statins for cholesterol management if you suffer from the side effects. Inclisiran is one alternative but the qualification requirements are quite stringent. Ezetimibe is another.I suggest you go back to your GP and discuss. As for 'lifestyle' measures to lower cholesterol it might work for some people who already have lowish cholesterol in the first place (let's say total less than 5) but for someone who has a really high natural cholesterol level, say above 7 it unlikely to get the levels down to satisfy the medics if you have a heart condition. Nearly 25 years ago I was found to have a natural cholesterol level of over 9 ( and likely to have FH although this has never been discussed nor formally diagnosed) and the best I ever got was 6.5 with a miserable and disruptive diet, but after life and my resolve got in the way it crept back up so I ended up on statins, and have been taking them ever since. I now take 80mg atorvastatin and the best I have ever achieved was just under 4 (possibly helped by losing 13kg). Hope you get sorted.
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There are some alternatives but that needs a discussion with your GP and/or cardiologist. I can’t take statins but one of the alternatives I’m on can only be offered by a hospital consultant. Maybe ask for a referral to the lipid clinic.
hi Jenny Rx. Read your post with interest. I too can’t take statins . Had muscle wastage in Atorvastatin and rosuvastatin. I am taking estemibe at present which does not appear to be lowering my cholesterol that much. I had a HA in sept 2020 and 3 stents. Two in RCA and one elsewhere. I’m really interested what you wrote about an alternative offered by hospital.
Never heard of statins causing muscle wastage. May be worth asking my GP because I've had very significant muscle wastage and worsening of my spinal problems since starting on simvastatin
yes quali pop look into it. I had no idea why I was wasting away. Had a blood test and doctor rang me and told me to stop statin immediately. I tried Atorvastatin before H A and was changed to rosuvastatin after wards. I did not feel that bad just felt like my strength was ebbing away. I had the beginning of something that is shortened to “Rab” I can’t recall the complete name. It took me quite a long while to get over it but if course I do worry because of me cholesterol. Achy joints is part if it too.
I have annual blood tests which have always been fine and can't say I ache. My spinal problems have got much worse but I'm sure that's not connected to statins but I'd never thought of the muscle wastage. I just assumed the (baggy) legs and arms were weight loss b ut I do feel really weak and wobbly.
I first noticed it (as did my GP) the summer after my heart attack which was in NOvember so around 6 months. My summer skirts all fell off. I'd been on Atorvastatin up to March but it didn't suit me so was changed to simvastatin. Went to doc for a check up around June and he commented on my sudden weight loss and did an immediate check for cancer. When that was clear we just assumed it was weight loss from a change of diet. I do have regular blood tests so I assume that includes creatinine. My kidney results have always been fine. What I just looked up said symptoms are
Severe muscle aching throughout the entire body
Muscle weakness
Dark or cola-coloured urine but I have none of those at all; just the muscle wasting and weakness.
Seeing a GP in person on Tuesday so I will definitely ask whether my annual blood tests cover this. I did have one questionable kidney result about 2 years ago but a repeat test was quite normal. I'm just not sure the test covers s what you are talking about. It's definitely worth investigation. I really struggled today to walk across our little garden. A year ago I could dig it, weed it and mow the lawn. Just deadheading a dozen tulips left me utterly exhausted.
is your pain in the hip area? Thus is what happened to me. I’m the same .A year ago before all this started I was quite energetic now I’m feeling tired and put off doing things. This is not me.
The blood test I had I’m not sure if it was specific to this CK thing ( it is creatinine kinase levels) that turns into rhabdomyolysis
The doctor told me that it will return to normal within 3 months., which I think it has but it’s left me with weak muscles .
I am 71 and was a very energetic person before all of this. I have to say that after my heart event I picked up again and began to feel quite well apart from the awful side effects of meds but a year later I’ve started to go down again now. I worry about lack of proper cardio excersize and if course my cholesterol.
I hope you get some answers Qualipop. Please keep me up to date , I would like to hear of your progress. Xx
NO, not specifically hips. I have a lot of spinal problems; dried out discs, my spine has slipped, several trapped nerves. I've had 30 years of it and now can't stand upright for more than a couple of minutes but a year ago I could do the garden and two years ago I could walk my dog; not far but can now barely get to the end of the drive and if I walk in the garden and try to change direction, I fall over; just really wobbly. My hips do ache badly when i first get up but they ease when i get moving. The main thing that's noticeable is the way muscle has simply vanished. I first noticed it 2 years ago and my GP commented on it just thinking I'd lost weight.
oh qualipop im so sorry to hear this. Do you know the reason this has all happened.? There’s me moaning about my deficits and yours are worse. I do hope you can get some help.
One of my problems was caused by a hysterectomy and adhesions s ticking bladder and bowel to my spine but they have no idea about the rest. I get t old just age but the muscle loss has all been in the past 2 years since I swapped from atorvastatin to simvastatin. It could of course just be lack of exercise.
but that catch22 if you don’t feel well no energy then you don’t want to excersize. Look into it and see what yourGP says. These things do creep up without us realising.
OH I will ask on TUesday. It's a new GP who should not be influenced by my medical history. The others just usually blame my spine problems. My breathlessness I'd complained about for over a year was all muscular- until I had the heart attack. No one even considered it or asked about family history. It was only a newly qualified doc in urgent care who asked questions and booked a stress test but the HA happened before I got the appointment
the muscle wastage that happens when you aren’t exercising regularly into your later years is quite remarkable. That’s why the NHS is recommending strength exercise as well as cardio now. Loss of muscle is associated with many health issues including diabetes. It’s hard if you can’t exercise. But it is possible to do exercises sitting down. Our local sports centre does chairobics and chair Pilates.
I understand that but this blood test is something that needs ruling out. Our cardiac department doesn't seem to agree on exercise though because I was completely refused cardiac rehab purely because I use a wheelchair or mobility scooter. There was no assessment or discussion just a point blank refusal.
so a refusal based on your mobility issues not your cardiac issues? Really not very inclusive. Shows a lack of initiative to exclude those with disabilities who need exercise as much as the more mobile.
Absolutely and simply an assumption. I was never asked if I'd be able to do it or had it explained what was involved. Just the one nurse who handed me a book of instructions and assumed I wouldn't be able to do it. I desperately wanted rehab if only for my confidence.
Has your condition improved at all since you stopped the statins? A few years ago my pain got much worse so my GP asked me to stop them for around a month. It made no apparent difference. He reckoned it would take a month to get them out of my system.
I emphasise with the issues you are having with statins. I was prescribed in succession Atorvastatin, Simvastatin and Pravastatin, all of which gave me serious problems. A year on Ezetimibe did nothing for my cholesterol which has a baseline of 4.4. During a consultation with the Clinical Pathologist at the local hospital, I was persuaded to try 10mg Rosuvastatin on alternate days. Initially it gave me a headache, buf I persevered and now take that dose daily and my cholesterol sits at 3.7 which Is generally considered acceptable. So much for the 2.0 target (total cholesterol) which I understand in most cases is unachieveable. You started from a high baseline, so getting into the "normal" range must be regarded to be a considerable achievement.
All I can say is give it time. You might be better trying the equivalent of your currsnt dose split up over time, say 20mg daily or even dropping back to 10mg daily. I have no issues on that dose. As has been said there are other medications that treat cholesterol, so hang in there... something will be found to suit you. 😀
I'm currently taking 40mg (the highest recommended dose) on Mon, Wed, Fri, Saturday. Maybe I'd be better on 20mg daily - that would be a marginally lower dose over the week, but might be more effective with hopefully fewer side effects.
When I've dealt with cardiology, they have always referred to total cholesterol. As I said, a level of 2.0 is a target. Cardiology and pathology at the local hospital have always been happy with me being 3.7.
As regards splitting your dose of Rosuvastatin, I would certainly contact whoever initiated the prescription and get their okay to do it. Seeing you have had so much trouble with statins in the past, it seems rather harse to stick you straight onto 40mg. Surely it would have been better to start you on 10mg and slowly increase the dose to give your body time to acclimatise.
Judthepud I think it will be difficult if you have high cholesterol that is genetic rather than, say, lifestyle-induced. You can try a basically cholesterol-free diet, with plenty of fibers such as porridge, but unless you are eating loads of saturated fats/red meat etc right now, you won't go from a 7 to a 2. My brother and I are genetically disposed to not produce enough "good" cholesterol and to have rather high "bad" cholesterol. He tried his hardest for 6 months to eat like a monk and only was able to lower it a little bit. But with statins (the highest dose: 80 mg of atorvastating + 10 mg ezetimible), we've been able to get it down almost immediately to rock bottom.
I'm sorry you hae bad side effects. I would say that statins give me some leg aches but after several heart attacks, I can live with that because they do lower risk for future events, and if you've never had a heart event they can also retard (but not stop) coronary artery disease. Have you asked about only ezetimibe?
I do think it's worth your booking an appointment fir 10 minutes or 15 to talk to your Dr and explain all your worries then book another appointment if not working.Self medicating with alternatives unless your Dr says its ok to do so is risky. The arteries to the heart aren't that big and if they are blocked or narrowing it's urgent to get this sorted that's why they give you 80 mg it reduces cholesterol drastically. The cardiologist said they see the results of those who won't take them and it's very sad I've learnt to tolerate leg pain off and on with exercise to have my cholesterol drop 2 points in 6 weeks it's now 3.6. So, keep trying, keep exercising ,keep to the Mediterranean diet Do your best ..
meg4u I am with you on the leg pain. I've read some studies that found that only less than 10 percent of statin users experience it, but it's much higher I suspect for those of us on high doses. For me it's the lower legs, just above the ankles, especially in the morning. But it goes away as I move about and distract myself...
Hidden I think if you couch it in terms of "this is what peer-reviewed studies say" it's fine, and in fact should be encouraged. I've learned a lot from posts on here -- some of which I'd even describe as "medical advice."🙂
Maybe you could ask your consultant what they think of the 'natural' alternatives ie plant sterols. They are supposed to reduce cholesterol but I have no idea if they do. Could be worth checking with medics tho if you feel you can't tolerate statins. Good luck.
You might find the answer to some of your queries below. However it is not clear to me whether Heart UK receive funding from the food manufacturers to promote their products.
it’s worth looking at the NICE guidelines. I take 20 mg Rosuvastatin and as my cholesterol was still a bit above what they want it to be after a heart attack, my GP wanted me to double my dose but according to guidelines, that would only give me 5% extra protection! Absolutely not worth it I thought! Having oats for breakfast every day brought it down a bit more but I’m still a bit over so I’m seeing a cardiologist about it soon. For me it’s my LDL that’s always just below 2 but apparently that’s not good enough. I was offered Etimizibe but declined as it can cause digestive probs and I have those anyway! I’ll post when I’ve heard what my cardiologist says but when I first had my heart attack the only risk factor I had was my family history and I know some of them didn’t have high cholesterol anyway so 🤷♀️
All of the above-it’s such a ( choose expletive) when your body wants to have high cholesterol!!
Try to work with your Dr to get the right statin or other treatment for you.
However, I would add that whilst, if your cholesterol is naturally genetically very high, no amount of oats/apples/chick peas/mackerel/fresh steamed vegetables is going to prevent or stop it, you can help yourself by NOT eating a poor diet. Read up on recommended advised lifestyle and foods to avoid and ruthlessly stick with the recommended foods. You can have a great diet without processed/high fat/high salt/high sugar foods -there are plenty of books or websites to read for advice.
I’m sure you already know this-don’t smoke and drink alcohol only in moderation .
And the other thing that can make a difference is exercise-regular and frequent which is good for mind and body. Try to get your weight to the recommended range for you.
Very best wishes to you in your endeavours. If you can get referred to a lipid clinic you might find it very interesting and beneficial.
I’m on rosuvastatin. I also have familial hypercholesterolaemia. I had problems with simvastatin and atorvastatin. I was started on rosuvastatin at only 5 mg which was then put up to 10 mg as I was tolerating it. My cholesterol is still not low enough but he is reluctant to give me more so I have been referred to have PCSK9 inhibitor injections which they tell me have less side effects. This all came about because I was referred by my GP to a lipid clinic and they have been brilliant as they really understand the side effects of these drugs and strive to minimise them.
Take care if deciding to take a statin on alternative days without agreement with your doctor. A neighbour did exactly that and suffered a stroke. He is now paralysed on the left-hand side of his body, his speech is still very weak after over a year, and he is incontinent.
I don't mean to frighten you but statins only work for a certain number of hours. They prevent the build-up of plaque in arteries and even if your cholesterol level is good that does not mean an artery will be prevented from a buildup of plaque.
"We elected to use rosuvastatin in an EOD regimen because its half-life of approximately 19 hours is the longest of available statins, and it is the most potent statin at reducing LDL-C levels..."
Statins can also help stabilize the plaque, but you are correct that they won't definitely prevent the build up. In the case of my latest cardiac arrest (god, that sounds so dire!), a piece of unstable plaque broke off in an artery that was not significantly clogged. Bad luck for me, as I was on a relatively low dose of statins after having stents put in...I can't help but wonder if I was on a high dose of statins from my late 30s if I'd be fine now in my mid 50s...
The 19 hour half life of Rosuvastatin is why it can be prescribed for alternate days. I started on 10mg on alternate days and only increased to daily (at my request) when my cholesterol started going back up. My GP readily agreed to my suggestion. Taking just 10mg, I have headroom to play with if it starts to rise at some time in the future.
During the six weeks of treatment, LDL-C decreased by 48.5% with the daily dosing regimen, compared with 40.9% with the alternate day dosing regimen (Figure 1)...
Yes, I read that paper which was interesting and confirmed what the Clinical Pathologist and my local hospital told me. I was very much against trying another statin after Atorvastatin, Simvastatin and Pravastatin all gave me significant problems. However, she persuaded me to try Rosuvastatin and although it initially gave me a bad head, the results were so impressive that I stuck with it and now I have no issues with it.
I fully agree that the answer to any question regarding medication should be normally qualified by a 'but speak to your doctor' statement especially where dose adjustment or alternative meds apply and obviously where someone is considering stopping their medication. However that should not stop people giving their comments regarding alternatives but with the above qualification. This information can often be very useful to someone who is seeking an alternative, perhaps due to side effects, since sometimes such alternatives are costly and doctors are reluctant to prescribe because of that, and will perhaps hide behind a patient's lack of knowledge of alternatives. Inclisiran is one such medication although the rules that govern its prescription are quite clear now it has been approved by NICE and The NHS.
Finally the fact that this post and replies remains intact is testament to a more flexible approach than the one you believe applies, so it apparently conforms to community guidelines, and there are many others like it.
I do not agree that Lowerfield was giving medical advice as clearly BeKind is suffering from nasty side effects of these statins. While statins are great for reducing cholesterol I feel that all he was doing was advising for her to see her GP and giving a few alternatives to ask him about, so clearly if its not in her interest then the GP will tell her so. I believe that is a major part of the purpose of this forum. As for the exercise alternative if cholesterol is 5 or lower a lot of GPs advise trying exercise and lifestyle changes first before prescribing statins. Mine was 4.8 when I was prescribed statins 20 years ago and I am still on the same dose with cholesterol of 3.8. But feel the life change with exercise probably will not work for most people.
Hello there. Statins not only reduce your cholesterol but also help to stop it breaking off and causing a stroke or heart attack. I also have inherited hypercholesterolemia with family members being taken at fairly young ages. My cholesterol was 9.6 at it highest and I was put under a lipid specialist who put me on Rosuvastatin 5mg and got my cholesterol down to just under 5. Despite this I ended up needing an emergency double by pass aged 61 -7 years ago and now take Ezetimibe along side it. Read that as going in for an angiogram and having life saving emergency surgery the next day. My dear brother chose to ignore all the advice and had a massive widow maker heart attack aged 66 last year. Good luck ☺️
I have been taking statins for over 9 years. I have had all the ones you mentioned and a few more. My problem was they weren’t lowering it much. Although it was only ever around 5. But I had different side effects. Aching muscles, raised blood sugar, diarrhoea, constipation……. My new consultant understood my issues and put me on an injection. New type of cholesterol busting medication. Maybe speak to your GP or consultant.
I really sympathise with you but agree that the only resolution is to talk it through with a medic. I appreciate it’s not easy. I am on merry go round with gp over my possible reflux as well as statins, Mine has been creeping up and in 2020 I was put on avorastatin and had the weirdest dreams- some lucid -ie awake but dreaming. So I stopped and tried diet ( waste of time for me) but my ldl wasn’t too bad at around 3.2 Then other things happened ( prolapse, then heart issues and now eye problems ) so cholesterol was not top of my concerns. That is until another session of ectopics and palpitations and referral to cardiac consultant. Who said it looked like I had familial high cholesterol so should be on statin and try esomeprazole for my chest symptoms as probably reflux caused by anxiety ( I am facing likely sight loss in both eyes so yes have had a lot of stress). I’m saying this because for the first time my cholesterol has shot up. Overall is 7.9 but the LDL is 4.5. I had some Rosuvastatin to try - lowest dose- but got crashing headache for 24 hours so took pain killer and had immediate stomach problem. LOL. Now I’m not assuming the statin actually did that and am going to try again. In the meantime the dr gave me estimbe to try - and I had diarhea badly. Again I’m not blaming the drugs as other things going on - including bad nightmares every night, the reason I tell you all this is that anxiety can really mess with your body - I’m convinced it has led to increase in my cholesterol . So don’t give up on statins. You coukd find out you settle ok on one - even on one you have already tried. Also don’t panic. Statins are important but take time to be most effective ( I fear at 63 I’m late to the party). Go through your concerns with a gp or the cardiologist- I know how hard it is. Mine was so rushed as well and I end up not asking the questions want even though I’m paying! But persevere. Be honest with them about the anxiety you feel and be persistent. I’m going to be! Good luck and take care. Let us know how you get on.
Only thing you can try is to reduce red meat, eat chicken , fish. Boiled rice, new potatoes, salad, fruit, skimmed milk. Unsalted nuts a handful a day. Few squares of dark chocolate . Porridge oats for breakfast. Also the yogurts or drinks with plant steroids. A good walk every day and don't eat big meals. These are all the things I know can help but I find hard to stick too totally myself but good to try 😌
Im not a Dr and Im sure about your specific levels but cholesterol is essential for proper brain function. Maybe speak with a neurologist or even a naturopathy Dr. It's important to get an equivalent amount of omega 3s as omega 6s. Cut out ALL processed seed oils and vegetable oils. Only use cold pressed oils. ie Extra Virgin Olive oil of good quality from ONE region. Avoid the once that have multiple sources of their oil. Alot of hanky panky goes on in the blending of oils from many places. Cold pressed Avocado oil.....pretty much any cold pressed oil should be the only oil you use. Unfortunately eating out at restaurants is the worst because they use the bad oil and it used and reheated over and over. Completely toxic. Take a Cod liver oil supplement or krill oil supplement. Something to boost your omega 3s. Eat wild caught salmon or canned sardines....in their own oil...not added corn, canola or vegetable oil. Those oils are so processed the body doesn't recognize it as food and cause systemic inflammation.
Also do not eat ANY kind if meat that has been grain fed. It's gives the meat a high omega 6 fatty acid profile. I've learned alot from Dr Hyman and Dr Gerg on YouTube about this subject.
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