I wrote this reply in response to 'idontbelieveit' but having written that reply I thought it deserved wider dissemination, so with apologies to 'idontbelieveit':
Some time ago I wrote a fairly long piece on FH that presented a different point of view than the current paradigm. It was immediately deleted by the moderator(s). Looks like I had crossed some sort of line. I presented a long, thoughtful and well researched piece that deserved at least an airing.
In no way did I suggest anyone with FH should dump their statins and enter the promised land of perfect health (according to me and my prejudice). I presented a thoughtful discourse on the subject. But with intervention from the moderator(s) the sacred cow lives another day!
Having said the above, to my mind we need to define what a forum is:
'A meeting or medium where ideas and views on a particular issue can be exchanged.'
So perhaps we need a new definition of forum, or Heart UK needs a makeover!
Information is everything, and unless everything is exposed to the white heat of discourse, then we don’t go forward.
I’m well known here as a sceptic, but sceptics are the life blood of change.
I think the point here is that the chief medical officer has ordered a review of medicines because of public perception that doctors are over medicating with drugs like statins, and the chief medical officer herself has said this risks destroying the relationship between doctors and the public. She is taking this very seriously.
This isn't just a matter of fringe cranks on the internet - 50% of GPs have said they wo't implement the new NICE guidelines on statin prescribing. We need a serious debate about preventive medicine.
It is in the interests of EVERYONE who has been told they have FH or might have FH that there is more investigation of risk factors and the data is already out there, and the majority of us have the internet and can look it up. The reason is two fold - to decrease anxiety in FH patients at lower risk and so medics can identfiy those unfortunate people who are genuinely at very high risk and concentrate resources on them.
I'd describe the past two and a half years of my life as hellish, and that's largely because the medical profession have refused to engage when I have raised studies like this, despite them admitting that I am well informed. As a result I'm not taking statins and not attending a lipid clnic, so they haven't succeeded in making me take statins, they've just succeeded in destorying my mental health.
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And to add, I'm as much of a patient here as anyone else. I'm not trying to promote or push an agenda - Ive got real (bad) experiences of NHS FH treatment. I may well get deleted, but I don't think Heart UK should be trying to stop people talking about their own experience of treatment and views whether it's good or bad. It's an individual's choice whether or not to use medication and people can vary widely in the effects statins have on them. Some people have no trouble taking them, others are in agony. In my own family I have one sibling who takes statins happily and three who refuse because of the agonising pain they've got when they tried them.
Just repeating that statins are safe and well tolerated won't change the fact that many of us know differently from either their personal experience or that of our close relatives and friends. All this does is push people away from the medical system altogether. I was talking online elsewhere to a woman who had cholesterol of 14 ON STATINS, and is now receiving no treatment having discontinued statins because they made her feel she might as well be dead anyway. She quite possibly has homozygous FH from her family history and cholesterol levels, but isn't even receiving treatment because the medics are so inflexible about statins.
For me a Doctor is the gateway to the more serious issues such as my recent hernia stuff.
Outside of that I take care of myself.
It seems to me that the majority of the people visiting a surgery are more interested in travelling to Boots with a prescription than addressing their lifestyles.
FH is a death sentence unless you take statins for the rest of your life? I don't think so.
I, too, have stopped statins against advice of (U.S.) physicians. I try not to go in for visits unless absolutely necessary because I don't want to argue about the issue. I'm a retired internal medicine nurse practitioner, have done a great deal of research, and have experienced adverse effects from statins. They are not for me despite the fact that I'm 74 and had a mild heart attack last December. I also have a chronic respiratory infection (MAC) and bronchiectasis. I prefer to maintain as good a quality of life as I can with these impediments rather than add additional problems for a questionable longer life.
I'm going off my family history Mike. My oldest brother is 70, takes blood pressure meds, so has on risk factor, won't take statins, and hasn't had a heart attack or a stroke.
If he's going to get premature heart disease it's taking it's time.d And according to the first consultant I saw my brother also has 'possible' FH. But of course he's a non smoker. My dad on the other hand who smoked for nearly 40 years had a heart attack in his early fifties, and on this they are basing my 'possible FH' diagnosis.
From your comments I would guess that you are in favour of open debate as is Heart UK.
I also assume that the people who post and read here are adults who have a discriminating faculty.
So, encouraged by your attitude I am sure my heresy would be welcomed and you would open the debate by publishing my piece on FH.
To clarify my position at the moment isn't that I think I have FH. I think I am far more likely to have polygenic hypercholesterolaemia if anything, but I also think my highest cholesterol reading was caused simply by my weight, since my cholesterol dropped back to below the FH cutoff point of 7/5 when I lost about 1 and half stone.
Yet despite this I am told I have 'possible' FH (which is just speculation not a diagnosis), I've had to fight very hard to get them to fund a genetic test, and they still haven't done it, and my risk otherwise of heart disease is less than 10% and I would never qualify for a statin even under the new guidelines.
So it annoys me hugely when I go to see a consultant who tells me - no word of a lie - that I will die if I don't take statins. Obviously I will die anyway at some point, but even If I do have FH, my chance of developing heart disease at all (not dying of it) before the age of 60, is 30%. So if I do nothing it is still twice as likely that I won't develop premature heart disease than it is that I will.
I just don't see how it benefits anyone for the NHS to scare people witless!
Mike move on we can read your views in the original post that this post refers too.
You don't need to drag up the past.
HI Traci, I won't name the clinic for obvious reasons, but the conversation went as follows.
Me 'well I've got to die of something'.
Consultant 'well you don't want to die in your prime do you'?
Apart from the fact I'm well past my prime, it was clealry a bit OTT to suggest I was even going to develop heart disease, let alone die, since the consultant had just performed a physical exam which showed me to be in completely normal health and I'd been in PET scanner not long before which also showed a completely normal heart.
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Coenzyme Q10
My genetic test for FH was negative. 
