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.
Well done for getting your funding. The genetic test is just a simple blood test, mine was over so quickly that I didn't believe that they'd actually done it after 4 and a bit years of fighting.
I agree with you about the perception of risk and the discussion of it, that is nobody will discuss it once you have that dreaded high TC...or is it so dreaded ??
I had to wait 9 months for the results, I hope yours come quicker.
"us being told that everyone with FH has identical risk" - I'm fairly sure I've always been told that the risk figures were averages. Anyone got a link to something official saying otherwise?
"Coronary heart disease risk estimation tools such as those based on the Framingham algorithm should not be used because people with FH are already at a high risk of premature coronary heart disease."
This also contains the advice on statins.
"Healthcare professionals should consider prescribing a high-intensity statin to achieve a recommended reduction in LDL-C concentration of greater than 50% from baseline (that is, LDL-C concentration before treatment)"
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FH child and statins
Has anyone had any experience of having an elderly relative with FH?
Do I have FH?
FH??
