I was started to Simvastatin a number of years ago after diet changes did do anything to my levels. Simvastatin did not bring my levels down at all so was put on Lipitor 20mg but when my levels were still not coming down significantly it was combined with Ezetimibe 10mg. My levels came down from around 9.2 to 5.7 then 5.2.
On the downside I was experiencing the most awful joint pains and neck pain which at first didn't associate with the medication. I did question my consultant about this on a number of occasions but was told statins didn't cause joint pain. Only after being advised by my G.P, to stop the statin for 2 weeks did the penny drop. The pain disappeared after only a few days. Then back on the medication and within a day was back to square one.
After much consideration earlier this year I took the decision to stop the tablets completely as I was by that time having the most awful muscle pain as well as joint pain and some days couldn't hardly walk. I was constantly tired and had no interest in anything. Some days all I wanted to do was sleep and had no interest in anything. Even getting out of bed in a morning was a struggle and I ached so much.
After being off any medication for 6 months the joint and muscle pains are no more and I started to get my energy back thankfully but my levels have continued to rise and after the last fasting bloods results came back at Total cholesterol of 10.1 - HDL 1.9 LDL 7.3 and Triglycerides 2.8.
I am now being seen by a different consultant who wants to start me on a very low dose statin twice a week to see if I can tolerate that and to monitor what effect it has on levels. Also I am to have genetic testing for FH. Previously although I pushed for this to be done I was not offered a test even after being told I more than likely did have FH.
In all honestly I am still reluctant to commence treatment as I can't get out of my mind how awful I felt while on statin medication but I feel so stressed about how high my levels are this is making me ill and feel constantly anxious about what's going to happen to me if these high levels remain or get even higher, especially when " well meaning" friends are constantly telling me I have to take the tablets as I could have a heart attack or stroke. I will be commencing treatment this week and see if this low dose will suit me and start to bring my levels down.
I feel that the day I was diagnosed with high cholesterol my life has completely been taken over by it. I am not the same happy person any more and it's all I think about. Luckily I have a very supportive husband but I think even he doesn't know how to handle this now.
Is there anyone else who has been in a similar position?
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maisie_dazy
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Hi Maisie. Sorry to hear about your statin problems, it must be awful for you. Did your GP tell you what type of cholesterol you have? I ask, because I have had high cholesterol for many years and started at a figure of 13! I was given various medications before they told me I had Type 3 hyperlipidaemia and am now on fibrates, and with diet and exercise have brought the figure down to 4.8. Maybe you shouldn't be taking statins for your condition. Is it worth getting a second opinion?
Hi Hansi...thanks for replying. I have never been told what type of cholesterol I have. After so long with problems I have now seen a different consultant for a second opinion, hence the different medication. I did mention fibrates as I have never been offered them, only statin therapy but even now have been advised they possibly were not for me but if I still get problems with the low dose statin I may be put on a fibrate. What a significant difference you have had with your level with this medication etc. I can only hope that this different statin and at such a low dose will work. I just wish I knew what to do about all this stress, which I know doesn't help.
If you would like to send me an email directly at frank.cooper@optusnet.com.au then I will send you a PDF copy of my published book 'Cholesterol & The French Paradox' that will answer many of your questions. My own mum had a cholesterol level like yours and would have lived well beyond her 85 years if she had not tripped and broken her hip. Many people with your high cholesterol level live longer than people with low cholesterol levels so you need to put things in prespective. You can also watch some videos I did that will help you that you can find at youtube.com/watch?v=zKe60-y...
Hello Frank- my name is Patsyblue - I have read with interest Maisie's story and it mirrors mine completely I have over the last 10 years tries a lot of statins Ns fibrates after about 6months all the old side effects kick in even hairloss which is is distressing.
I have recently had a small clot in my lung and one in my leg all because. Doctor misread the sonnographers report these were due to a bacterial lung infection - I was we'll until the infection and the clots were left untreated for 9 weeks until the consultant realised what had happened- prior to being taken ill my GP had taken me off the vibrate and bp tablets for two weeks for a break as the side effects had made me so bad
So I would be interested in you advice- I will send you my email many thanks
What an impossible situation for you. Talk about the cure being worse than the disease! Your situation mirrors mine in a way.
I also had to fight to get genetic testing, although your levels are probably high enough to have a diagnosis of FH., I think your triglycerides would be much higher if you had type 3 and it is much rarer.
Maybe you could try statins twice a week and see how you get on.
Frank is living proof that not everybody with FH dies of a heart attack at a young age so maybe what is needed is more research..there is some evidence that older people are less at risk than younger ones...but I know that doesn't help you.
Like you, I sometimes wish that I had never got my cholesterol levels tested.
Hi Allwally....like they say "ignorance is bliss". What I can't understand is that when I first had my levels checked years ago I was told I didn't need to go on medication as my "good" outweighed my "bad". Which obviously then all changed for some reason.
I will try to low dose therapy twice weekly and see how I get on but it is with reluctance believe me.
We sound we are in a similar boat! Have a look at my profile and you can see my history. I was off Statins for a couple of years and felt so much better but after a telling off from my consultant I reluctantly went back on them. Only 20mg of statin (compared to the 80 before) but very soon all the symptoms came back. Breathlessness, tiredness, generally a lack of zest! My joints are painfull (knuckles and knees), basically I feel old and I am 41. A few thing I have introduced into my diet to help combat these symptoms are Coq10 at least 100mg a day (200 is meant to be better). I had cut back on these as it is getting expensive but now I feel like this I have just up my dose. I take 750mg of plant sterol (healthspan) this has helped reduce my levels (9.7 down to 7.1) but not enough to keep the consultant happy. My consultant points out that Plant sterols have had less testing than statins. I am also changed to coconut fat instead of veg oil for cooking. Not only do i rattle (and I hate taking tablets) but it costing me a fortune but it is a damn hard decision in which direction to go. The future is hard to predict, my consultant has told me I will very likely die young if I do not take the medication but I feel so much healthier not taking anything. Welcome to this forum, loads of supportive people on here that are all in a similar situation. Louise x
Ps I also asked about Fibrates but I think the consultant feels that the for levels this high we need to be treated more aggressively and I pushed for genetic testing and hopefully will find out the results in March.
I have read your profile with interest and I agree we are in a similar boat! I have now, at last, been put forward for genetic testing, but no idea how long that will take. I am concerned for my children and grandchildren to be honest. Both my sons were advised to be tested and my eldest did go for a fasting test a couple of years ago and that came back fine. Unfortunately his wife had a heart attack earlier this year at just 33 and he's witnessed first hand the effects of the 80mg Lipitor she was put on after that event. After only a few weeks she could'nt even brush her hair as she couldn't grip the hairbrush and he had to feed her as she could't manage a knife and fork due to all the pain in her fingers. Now her consultant has reduced her Lipitor to 20mg she is a lot better in that respect but she is constantly tired and her memory is awful so I think if it was the case that his levels have risen he would not want to be put on a statin anyway. My youngest refused point blank to go and be tested and I can understand that.
I have bought CoQ10 and intent to take this and also, like you I have started using coconut fat. I did look at plant sterols but having, at one time tried herbal treatment instead of the statins found that it didn't do anything to lower my levels, in fact I experienced an allergic reaction to one of the herbs so I was back to square one again and back on the statins.
I am so glad I found this forum and like you said lots of others are in similar situations to myself, whereas for a number of years I was told by my previous consultant that the pains I was experiencing were "all in your head". My worry where muscle damage is concerned is that I only have one kidney and I know it's worse case senario but these drugs can cause kidney failure. You mentioned your Mum who had this and cancer and whether it was caused by the statins. I can only say that I have had skin cancer and also bladder cancer since being on statins, luckily both were treatable, Some may say I could get these anyway but I'm not totally convinced they weren't brought on by the statins. I've now been told I've got a cataract forming in one eye...another thing that's been reported with statins.
Now I've actually put all that down I'm wondering is it worth taking medication at all!!
Statins differ, so I'd say keep working your easy through them. The genetic testing results may also be very informative - but it might not. Most of all, don't stress it! Good luck!
When I read of the terrible side effects of statins from all of you brave sufferers the more I am inclined to refuse them when, and if, I am offered them. I have a total cholesterol level of 6.8 with HDL levels 2.3 and LDL levels 3.8 with Lipids 0.7. With a dairy free diet, and that is due to recently diagnosed intolerance (had to go private to get that done too, the GP was not interested in "intolerances" only allergies!) my figures improved with my HDL increasing and my LDL reducing! I am on NO medication except a multivitamin, Omega 3, Glucosamine for my joints (I have slight arthritis) Calcium with Vit D and a probiotic for my tummy, and I haven't felt so well in years!! What about my cholesterol? I will leave it to do what it does best. Keep me well, help me heal (after all that is its function!) and if I am asked to do another test by the GP I will just have to argue that it has been mooted that statins for women are not getting the results that the same medication in men are getting. All the very best to you all
I'm probably out of date, but I'd argue that 6.8 is fairly borderline (as long as you're not really young) and ask if that combines with the less-clear results for women to make statin treatment debatable in this case.
After having arrested at work,(no prior warnings or symptoms, and grateful to colleagues who did the CPR bit until the paramedics arrived 30 minutes later with the defrib!) I was put on a 'standard package' of drugs which included Atorvastatin 80mg, even though my cholesterol levels were only just above what I was told was bad. After taking these for 4 months, I have got so that I have difficulty walking and picking things up, with constant pain in my muscles and joints.
My GP ordered various blood tests, and advised me to stop taking the Statin until the results are known (tomorrow!)
Also being tested for Rheumatoid Arthritis to cover other possibilities, although I'm 57, admittedly overweight, I did not have any mobility issues prior to my 'event'.
So happy to still be on the planet, but after making the choice to modify my diet, and exercise more, I find I am struggling to move!
hi Micky...how terrible having that happen, you were so lucky...someone was definately watching over you!! You may be interested to read my reply to MumwithFH earlier concerning what happened to my daughter-in-law earlier this year after suffering a heart attack and being put on 80mg Atorvastatin, a very similar experience to yours. She was well aware what had happened to me when I was first put on statins but obviously after the heart attack it's a matter of course to be put on statin therapy even if your cholesterol levels are ok, unfortunately her levels were not ok. Personally I think your mobility problems are down to the Atorvastatin the same as my daughter-in-law.
Hi Maisie, I too am sensitive in a big way to these drugs and now take slightly higher doses than 'normal' of Plant Sterols and Omega 3 which do keep the levels down, But as previously stated are quite expensive. Along with co enzyme 10 and an oat drink daily this package costs about £40 a month. It takes up to 6 months to see results and just a few days to clear if any hospital tests or anaesthetic are required, and then the 6 months again!!!
A serious problem I had with the constant muscle pain was that I could not tolerate pressure on my breasts and missed a lump, which was luckily found at mammography. Be aware of other missed pain signals!!!
Does the oat drink cost much? If so, have you considered switching to oat bran in bread or porridge? That's fairly cheap but I guess it's still £6/month.
Hi, Not too much,- up to £i.39 a litre which lasts about three days as I use it as a night time drink and on my shredded wheat ( only cereal without salt or sugar!!!) , so not that much more than milk!! and I like it more than oat bran as I have no need of extra fibre!!!! But thanks for the suggestion.
I should be on statins too according to my consultant but am refusing to take them after bad side effects similiar to yours. My levels were total chol 8.9, ldl 6.9, hdl, 0.93. I try and follow the portfolio diet and have mine down at last test to 7.5 and 6.0. My consultant is still not happy with this but I have seen and heard of too many people having severe side effects with statins. My family are seemingly very long lived with no history of early heart disease, but I do have an aunt who died of bladder cancer and she was on statins for 14 years, so this makes me suspicious. I too have had a lot of stress since being tested and wish I had never bothered. The annoying thing is that they keep raising the levels for "high cholesterol" - when I lived abroad my levels were 6.5 and no one in Spain was bothered by it. I think unless you have other risk factors such as a family history of early heart disease, diabetes, obesity, high blood pressure, smoking, lack of exercise and poor diet then I wouldnt worry yourself too much. We will probably harm ourselves more from stressing over this and even the consultant said to me that high cholesterol isnt the full story when it comes to heart disease,
Thanks for your message. I have read a little bit about the Portfolio diet and after reading how your levels were lowered will take another look and certainly consider trying it. I have no history of family medical history as I was adopted, another reason why I feel I should have had a genetic test years ago.
Not sure if you read my reply to MumwithFH earlier but I've had cancer twice since being on statins, skin cancer and bladder cancer. So sorry to hear that your aunt died of this. Luckily for me my G.P. spotted the symptoms straight away and it was caught at a very early stage and now I will continue to be monitored for life every 3-6 months which is very reassuring.
I agree that by being stressed dosn't help and in articles I've read about high cholesterol there is always a chapter concerning stress.
Even though I know all this it dosn't help the stress unfortunately
Having the genetic testing really helped me. However, the results took 9 months to come through. I had it done in a London hospital and the lab was in Northern Ireland!
I went on every statin possible and I am not taking any more, muscle cramps, twitchings and pain in my finger joints plus a family history of muscle disorder helped me make the decision.
Actually the biggest "stress buster" for me has been discharging myself from the lipid clinic and putting faith in the only GP in my practice who is statin sceptic and will, at least debate risk versus benefit with me before hitting the prescribe button. Good luck.
When I was under previous consultant I was pushing for genetic testing over a number of years but kept being fobbed off...cost I suppose but then was told if I continued to take the medication (which was causing me so much pain) I would be put forward for testing! My answer was that I wouldn't take the medication as I couldn't put up with the side effects. The same as you my stress increased after
deciding to stop taking medication wondering what would happen if my levels continued to rise. Lucky you that your G.P. is a statin sceptic, mine on the other hand is just the opposite and has continued to tell me how I am damaging my health by not taking a statin. Now I've had a second opinion and have been put forward for genetic testing is a real breakthrough for me but having said that I have as yet to commence on the low dose statin regime recommended. At the back of my mind I am still concerned that all the pain will come back again. Will keep you informed of progress.
I'm nowhere near the genetic testing phase for FH, in fact, my consultant (who is a general consultant, not a lipids specialist - thanks, NHS!) doesn't think I have FH, even though my cholesterol level is through the roof and I've pretty much religiously stuck to a 'cholesterol-lowering' diet for the last 3 months!
I'm now suffering from other symptoms which I think are either related to my cholesterol (and stopping taking statins) or stress/anxiety brought on about worrying about it!
I think having a positive outlook is essential to being healthy - but of course, that's easier said than done.
I hope you can remain positive and try to limit your stress. Sometimes, I think it helps a lot just to speak to others in a similar position - this forum is a great place for that!
Hello Fuzzer and thanks for your reply. I have had a quick look at your earlier posts on here and your updated one. I will take a closer look tomorrow.
I was just thinking you've mentioned loosing weight on numberous posts and I wanted to tell you about someone I met while I was waiting at my previous lipid clinic. She was very obese, in fact needed two chairs to sit on but after having a chat with her and if she was at the lipid clinic too it turned out she didn't attend that clinic as her cholestrol was only 4.1!! So that shows sometimes our weight dosn't come into it. As for myself I lost 1 1/2 stone this year before stopping the statins but it had no effect whatsoever on my levels...I was hoping it would but it didn't.
I totally agree with what you've said about stopping the statins...and worrying about it....that's my problem I think. I try not to think about but somewhere I can't quite manage that and the stress is getting worse. Think I will have to start listing to some relaxation tapes and try and take my mind off it.
It's been good for me to received relies on here and realise that there are others in the same, or similar situation to myself at least now I don't feel like I'm on my own with all this.
My cholesterol was 8.6. I have had three different statins, fibrates and aspirin. All these pills give me terrible digestive problems that I just can't live with. My present was being ruined in an attempt to live into the future. The efficiency of medical science has left me with a terrible shadow behind me. Will I die of a stroke or heart attack and not see my grandchildren grow up? My GP gave me Omega 3 pills as a last resort but I still have bad digestive problems as a result of the previous medication and I am scared to take them. I have since been told by my GP that they don't work anyway. I eat sensibly and exercise most days. My weight is normal. I can't do any more. Patto.
Wanted to thank you all for your replies and support and thought I would give you an updated on what's happening.
Started on 10mg Ezetrol (ezetimibe) before Christmas before commencing on the low dose statin therapy (5mg Rosuvastatin twice weekly). Should have been on Ezetrol for 4-6 weeks before taking the statin. However after only one tablet the old side effects started so was told to leave them off for a couple of days then start again....took another and back to square one...pain, burning sensations in my back and awful pain in my knee, shoulders and arms.
Now after talking to consultant have been told as I can't tolerate the Ezetrol after only a couple of tablets he dosn't consider it appropriate to commence with the Rosuvastatin even at a low dose. So....where does this leave me? In all honesty in some respects I felt relieved on one hand that I was told not to take the statin as I'd forgotten how bad the pain was that I'd experienced before but having taken the Ezetrol for two days it brought it all back.
However on a positive note I have heard concerning the genetic testing for FH and I go for a meeting in February and to the genetic centre in March for testing.
No idea what will happen after that and still feel quite stressed about things but trying to be more positive.
Have an appointment with my G.P. tomorrow concerning another matter so will discuss things with him.
Oat milk "Oatly" costs about £1.60 per litre. I buy four boxes a week and use it for all milk replacement. Cereal, hot drinks and cooking. The colour of custard is beige but the taste is fine!!
I hope all went well at the GPs and let us know if we can support you further. All the best
I was due to see my GP.today...but,I was scraping ice off my car,and then fell over,flat on my back"!I was like a stranded whale .literally.....
snow seeping through my clothes and no one about and no way of getting myself up?
I started hammering on my car and shouting "HELP ME"
luckily for me,some new Neighbours noticed me,they came over and helped me get up!
what a Relief.!!!!!but,I had to cancel the gp appt,and a Health clinic I was joining this afternoon!!!!!!!! both places?
I was going to hammer out some kind of answer to our problem?
we all know the agony we go through on Statins,
but,it seems,no one wants to stop them!
is there no effective substitute?
I have been off the statins for about 6 weeks now,
my pain is less,but,not enough to cheer and dance......
plus,my GP has told me to cut down on the Painkillers as they are affecting my Kidneys and Heart,so,more tests,and chest x-ray,and possibility of liquid on the Lungs,a first for me.
but,and here I am hoping......over xmas and new year,I did have the Flu,and a really bad Cough,and she detected the sound over the phone,then verified it when she examined,I feel like I am just swaying from one result to another!
I had another Dopple test last week and they were still fine,so it appears my muscles have not collapsed like some people's do.
I have been in agony for years,but,had no idea about this Statin problem,
,I have taken them for years!!!!
Now it seems like everyone knows about them!!!
O ne thing is for sure,they will have to force feed me any Statins,'cos,I won't take any more...
this Forum is a Godsend.....thanks to everyone for their help!
oh,I forgot to say why I was like a stranded whale?
I have had 2 Major Spine Ops,and 2 Replacement kneejoints,
this means I cannot bend over to touch my toes etc.and once I am down?
I cannot use my hands and knees to get up?
because they are too weak to take the strain.
and,I have Scaffolding and Fusions in my Spine,which means I dare not bend over in case the lot splits open,or,collapses.......which also means I cannot take the strain of getting up by myself...what a pickle to be in!
especially when the snow is seeping into your clothes!
I guess I just have to keep on smiling!xxxl.o.l.Pat...I am still an Optomist...
Hello Silversurfer4739 - What a day you've had!! Glad you are "back on your feet" and able to chat to us. I have been one of the lucky ones who have not been given statins and after reading all the blogs on this forum am very determined that I will not need them. I watch what I eat (not rigidly just keep an eye on my weight) have to be dairy free due to intolerance (only found out two years ago) and try to exercise every day. (Something you will have problems doing with your bionic joints!) Has your Dr given you any advice about exercise and diet taking your problems into account or is he expecting you to do it all yourself? Perhaps the Practice Nurse can give you advice. Best wishes
Hi Silversurfer 4739...what an awful thing to happen to you and thank goodness that your neighbours heard you and were able to help.
People are just not aware about the dangers of statins. I was told today by my pharmacist that some people he knew were on high dose statins with no problems.......my words were....no problems as yet!! In some it does take years before ill effects take place but for others it's literally from the first tablet.
Anyway you take care and like patch14 says do speak to you G.P. or practice nurse for advice.
Hi I'm a woman aged 49 and I'm pretty upset my cholesterol levels are 7.4 ...it was 6.7 back in October ... I know I've gained weight and eat a lot of cheese so I'm trying to see if diet and exercise help before I take statins ... Good luck
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