Been posting on a here for about the 3 years it's taken me to get this result. I'm relieved, but also annoyed that's it taken me so long to get this result and because I know a load of other people are still being told they have 'possible FH' and denied a test.
It's a joke, but not a very funny one.
What is the test? I assumed they just discussed. The health of your predecessors and decided from there
Good news on FH. What is your cholesterol now? What is necessary for one to get GP referral to go for FH tests?
The initial genetic profiling is rather expensive for the first person in a family to be tested - they have to look for all the possible faults in multiple genes. Sometimes they then have to re-test to see if they can discover more than one gene fault.
My test took a couple of months to get the initial result, then another month for the second test.
However, now they know which gene is dodgy, they will only have to test my children (and potentially, my dads siblings & families) for that one fault, which is a lot more cost effective.
I'd been 'diagnosed' with FH almost 30 years ago because, to be honest, it was absolutely obvious with a CH of 18.9 & a strong family history. The diagnosis was only confirmed by the genetic test.
With your cholesterol of 18.9 did you feel any different in your heart activities?
Did you take medication to reduce the cholesterol numbers? Are the LIPID numbers under control now.
sorry for asking all the questions, your answers may help with people who are worried on single digit high cholesterol!
Thanks an advance.
Yes - I had developed angina.
Does it actually mean you haven't got FH, or just not one of the known genetic causes of it?
When first diagnosed, the CH was slightly lower - 15 - and the old-fashioned consultant said 'try diet'. 18.9 was around the time I had turned vegan (I'd just had glandular fever, so my liver was messed up even more - I couldn't tolerate dairy products).
The first drug I had was Questran - little plastic balls the strip the bile from the body, causing the body to manufacture more & try to capture cholesterol.
After 5 years I developed angina, had an angioplasty (before stents were invented).
At that point I was put onto Simvastatin 10mg. No problems, although when I happened to stop the drug for 2 weeks (forgot to take it with me on honeymoon), I got leg cramps - but that could well have been the alcohol we were drinking.
I moved up to max doses of Simvastatin, then Atorvastatin, now Rosuvastin 40mg, plus Ezetimibe 10mg & Fenofibrate 267mg. I, like the majority of people taking statins, have no side effects. Obviously I get my liver function tested once every 6 months, and my Creatine Kinase is normal. As I understand it, those few people who are unfortunate enough to get the statin muscle problem have raised CK levels.
I'm back to being a standard vegetarian, although my youngest has recently turned vegan which has helped with bringing my CH down a little more. We do eat plenty of oats & beans.
As for Plant Stanol/Sterol Esters, I'm sure they will help, but it either means eating quite a lot of the margarine per day or those sweetened yoghurt drinks. I wish they'd make a non-sweetened variety!
My most recent levels were: Total 4.68, HDL 1.3, LDL 2.52, Triglicerides 1.89 & Chol / HDL ratio 3.6.
Interestingly, the difference between just Atorvastatin 80mg to Rosuvastatin 40mg with Ezetimibe was to drop my total CH from 7.2 to 5.4 - mainly a drop in the LDL.
Thank you for your reply.
did you get a printed copy of you FH blood test results with an explanation on the type of GENE that may be causing any FH. As you say there is no problem.
Hi folks
Sorry haven't been around for a while. My GP had to do an individual funding request for me to get the genetic test, this was after I put in a complaint to the CCG about them not funding it, when it is recommended by NICE.
I have no idea what my cholesterol is now, I never wanted it tested in the first place and I'm not having it tested again.
The test is for all known FH gene mutations. There are hundreds of possible types of mutation on 3 genes basically. The genes are LDL-R, PCSK9 and APOB.
don't want to go back to the lipid clinic but where else can I get an FH test?
Possible FH 
FH and niacin
Do I have FH?
