Gutted

[MumwithFH]

Went to see my lipid consultant today and have been very politely told off.

I was discharged to my gp 10 years ago as my consultant was happy with my levels after being on statins for 12 years. However I decided to come off my statins 2 years ago because I wanted to try out alternatives (Plant sterols etc - see profile). I have seen some reduction total of 9.3 baseline(1989) to 7.2 with 750 plant sterols. Which I know is not perfect but better and was hoping was low enough to keep me off the statins. I have a very healthy diet, get exercise and size 8/10.

We spent 45 minute debating but I have had to admit defeat and agreed to go back onto statins again.

Although a disappointment I am very grateful he spent so much time with me (did feel sorry for those waiting after me). It was not what i wanted to hear but he made sense and I do trust him.

[2squirrels]

oh dear, that doesn't make me feel good about my short trial off statins, I have been praying it will work. I cam only hope.

[deepblue]

Hi there,

I have high cholesterol (8.9 without statins) inherited from my father's side and cholesterol ranges from my level to 10 in other family members. My great grandparents and grandparents never took statins and lived to their 80's and 90's without heart disease. My father has heart disease but not until his mid 70's. Read your profile with interest as my auntie died of cancer this year (she had been on statins for 14 years) - this makes me suspicious too and I am refusing to take mine at the moment. Got it down to 7.5 with porffolio /cholesterol lowering diet on this website but not tried the plant sterols yet. I am convinced that although cholesterol plays a part in heart disease it cant be the main factor as otherwise my family would have been affected. Diabetes, lack of exercise, smoking and stress have a big effect too and I wish doctors wouldnt be so concerned with just lowering cholesterol. I dont trust the drug companies or their "trials". I know I am taking a risk but statins made me and other members of my family ill and I dont trust them. However I do realise some members on this forum dont have a choice not to take statins due to early heart disease in their family, I suppose I would take them too if that was present in mine.

Good luck,

Deepblue

[Aliwally]

Hi Mumwith FH,

I have just read your interesting profile, thank you so much for posting it. Did your mum take statins?

It's good that your consultant took the time to debate with you. I suppose the ultimate decision is yours, but it is very difficult to argue against medical opinion.

Like Deepblue, I have stopped taking statins but my circumstances are completely different to yours. I don't have FH (and boy did I have to fight for that DNA test!), I have had very bad side effects from every statin I have taken and I have a family history of muscle disorder, my mum dying of motor neuron disease. For me, the risks outweigh the benefits, but for you they may not.

Incidentally, I have to tell all this to my lipid clinic next week and I'm not looking forward to it.

[MumwithFH]

Hi deepblue, just read your profile and we have a similar way of thinking. I had hoped that we just had high ldl and not FH. My consultant made it clear that he was certain I and son did have FH and I was taking a big risk not taking the statins. He could not understand why i would take a risk taking sterols which had less research and then reject statins that have 20 years of research! My original thinking was they were from a natural plant form and a better compromise for me. He was of the belief that he could offer my a proved treatment that could help me live a normal lifespan and I suppose now I can see his point. I will however keep looking and researching as I have a 12 year old with FH too.

Thanks

[DakCB-UK in reply to MumwithFH]

Statins are sort of natural too. Red rice yeast distillates and similar synthetic compounds.

[MumwithFH]

Hi Aliwally,

Yes my mum did take statins. We were both diagnosed in 1989, over 12 for her and over 9 for me (I was 18 at the time). She continued to take 80mg simvastatin until near to her death of breast cancer in 2009. Good luck next week.