Just sharing this interesting study on risk in FH - you can read the full text free
This confirms a few things I'd suspected about FH. Firstly risk tends to follow the same pattern in families - and secondly that risk varies greatly despite us being told that everyone with FH has identical risk. The main risk factors they identify apart from diabetes, smoking, etc are a couple of gene mutations - the Prothrombrin gene promotes thrombosis (blood clots) basically with some mutations.
I'm going back to yet another lipid clinic next week because I've managed to secure funding for a genetic test, and I have to go back to a lipid clinic to have it. I'm dreading it, partly because my previous 2 experiences were NOT good, and all I want is the test, since I'm not prepared to take drugs of any kind on the basis I MIGHT have FH.
But my previous experience is also that no one wants to discuss risk or have a sensible conversation about the idea that risks may vary hugely in FH. I appreciate this may make life more difficult for them, but they should also appreciate patients taking the time to inform themselves. My view is we can't be expected to respect their recommendations if they're not giving us the full picture.