Muscle pains

At the age of 17 (now 31) I was diagnosed with Familial Hypercholesterolemia and had genetic testing to prove this. Cholesterol levels were 11.7 mmol. Started simvastatin at 20mg, cholesterol did not lower. Increased to 40mg and slight alteration but severe muscle pains. So bad i couldnt get out of bed at one point. Was then started on atorvastin and same effect on lower dose. Tried ezetimibe 10mg with rosuvastatin 5mg and levels down to 5.8mmol. Consultant in lipid clinic now wants me to try adding fenofibrate 134mg a day. Started off taking 67mg a day and witihin a week i am crippled again and now having palpitations. Stopped medication for now.

14 Replies

  • I genuinely hope you are able to improve your health wgwright84. The best way to lower vldl is to minimise fructose intake. Lowering our intake of foods that promote insulin/IGF-1 prevents narrowing of the arteries. Having adequate natural protein (and the accompanying fat) will satisfy our appetite, although too much protein (especially lean protein) is toxic.

    Taking these measures, instead of focussing on lowering animal fat intake (which is relatively inert, raising both harmless ldl and beneficial HDL) will take us in the right direction with regard to health.

  • You probably have lpa, and need to eat more fat. Statins don't work on this. If you have high homocysteine, anything from animals will elevate the cholesterol. What does your blood panel show?

  • Why do we do this? Are we Brits to continually follow the good ole USA? Can we not open our eyes and see? Why would you have me follow the sickest country on the planet? Have you all lost your minds or is it i who is sick? I take no drugs and i am 60 and healthy and if i want to treat numbers i'll look for a mathematician, in the meantime i will assume my body will self regulate until proven otherwise.

  • You must feel so fortunate garlinge if your body regulates itself. For very many people they are not so lucky. Had you inherited the faulty gene that causes Familial Hypercholesterolaemia from one of your parents then you would probably not still be alive to feel so superior. It is thought that this condition affects 1 in every 300-500 families, which is a huge number of families having to suffer the loss of a loved one because they either did not know they had inherited this gene or they (like you) thought they would assume their body would regulate itself without any medical interference.

  • It shows high hdl and low ldl

  • Dont feel too alone as many others have also experienced these serious side effects. When I was your age, I had a similar level of FH high cholesterol as you have today, and as I got older it just went up so today its 15 mmol. I am 65 now. I dont take any medications for my high cholesterol, as I found the fibrate and statin side effects to be too severe. I dont have any heart problems which least for me... that medication may not be the complete answer. In fact, lots of people my age with one-third my level of cholesterol are getting heart attacks, whilst many with high cholesterol do not, so there are other factors at play besides cholesterol that causes heart disease.

    I think the point to make is that having FH does not mean that we will necessarily die of a heart attack, it simply means that we have a statistically higher chance.

    To change our risk profile for the better, we need to adopt a more healthy lifestyle then what is considered normal. Thats not very hard considering what many people choose to eat. So FH people need to improve their ''risk profile'' by adopting healthier eating habits. I personally think that the best solution for those with FH who cannot tolerate statins or other cholesterol-lowering drugs, is to adopt a very strict diet that eliminates all junk food, eliminates all deep fried foods, and is more in line with good diets such as the Mediterranean Diet or Paleo diet. Hope this helps.

  • Nice to hear some common sense,

    I spent a year on a very healthy eating plan,

    yes I lost over 3 stone,my blood pressure came down, my sugar levels reduced,but my cholesterol only changed a very very small amount,the whole point of this was to reduce my cholesterol,Some days my intake of food with cholesterol was zero,

    I have almost 2 years of blood tests results,which were taken every 3 months,The results over this time were disappointing regarding,cholesterol results,

    I some times wonder if we are all being programmed to be fearful of cholesterol,we are all different and I do wonder if the magic number we strive to obtain is not one size fits all,

  • My understanding is 2/3 cholesterol is produced by thy body and 1/3 from food intake therefore the question is why is the body unable reduce cholesterol while all other blood test numbers are coming down.

    so far no one has answered me this questions!

    All I can say is now days I am healthy, only time will tell.

  • I think your right,as quite often the only cholesterol I consume is in 1/2 pint of semi skimmed milk,

    I am now on my 4th new cholesterol pill,LIPANTIL MICRO 200MG,tHE SIDE EFFECTS ARE BEGINNING to worry me,nightmares,< normally never remember my dreams >

    palpatations,< feelings of stress > knees ankles a bit odd,hand fingers stiff,painfull,

    I see Dr soon,but am usually fit as a flea,I just ponder if cholesrerol is just the body being very efficient,even my good cholesterol is higher than average,

    I can see why people just give up on these pills,never read the leaflet,because you would never take them,

    I read a reply on here from a heart surgeon,he said his worry was sugar in all the operations he had preformed,sugar seemed to be a problem,he had 25 years experience,said he was laughed at by his piers,who did not agree,with him.

    He said the sugar made the pipes inflamed and sore looking.Sorry I am not a DR,but his words remain with me.

  • What a shame wgwright84. You must be feeling so helpless. I do hope that you get positive help from this forum but my first thought was that you need to return to your consultant and tell them about your body's reaction to the drugs. No medic will recommend you to try Kyolic tablets (available from Health Food Stores) but they have kept my cholesterol levels at a healthy level for many years now, with no side effects - and I too have FH. It might be worth giving them a try for a few months too give them a chance. They start at 100 mgs. Over the years, I have had to put up the dose but everyone's bodies are different.

    The charity HEART UK has a helpline so you might try asking them for help. Best wishes.

  • I looked up kyolic tablets, are they garlic, is kyolic a brand name, could you please add some more information, it sounds very promising,perhaps combing might solve a problem,

    thank you for sharing,

  • Kyolic tablets are made by Quest and are age dried garlic tablets. This results in no odour on the breath or through the pores - unlike what can happen with garlic oil tablets. I have never experienced any side effects apart from reduction of my hdl levels (the bad cholesterol).

  • Reading your post seems very familiar,I will have to look up the familial as I do not know what it is,

    It seems in my case once the dose was increased the problems started.Once slimvastatin was at 40 mg muscle problems started.

    I then went on two other, lipitol and an other one I can not remember the name,

    1 made me very depressed and I kept crying for no reason,i FELT AS IF THE LIFE IN ME WAS RUBBED OUT.

    The other gave me suicidal thoughts,on a very sunny day, no problems in my life, I heard voices telling me to slash my wrists,I waited for my husband to come back from shopping, I stayed in the garden terrified,the voice became more insistent,

    I was very lucky had a very good GP, she filled in a yellow form as I did,to this day I feel a idiot each time a new Dr is asked to look at my history.Even talking about it is hard as most would label you in a negative way,both these effected my mental health at the time,of taking them, went when stopped.

    I to have had palpitation thought it was me, also mild panic attacks again thought must start writing it down to see how often it is happening,I have not ever had this b4

    If you read my other post you will see further problems,

    I just get fed up of the GP not believing me,I have a happy life, the only stress in my life is keeping the hanging baskets watered in a heat wave,I am just an ordinary person,who is happily retired,

    My GP did broach the prospect of seeing a consultant,we shall see

    Thank you for your post.

  • Didn't you take CoQ10 with your statins?

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