don't want to go back to the lipid clinic but where else can I get an FH test?

After today's experience, I really don't want to go back to the lipid clinic again. I only went because I wanted the FH test but as usual I felt completely steamrollered by the consultant, that he wasn't listening to anything I said, and I will have to wait 4 months for the results anyway. But I am very bothered by the fact that he is insisting on doing a lot of further investigations I don't want. He paid lip service to the idea of "patient choice" but I just felt it was the same scenario as at the other two I had been to - the consultant trying to bully/scare me into taking statins.

I have a GP appointment tomorrow, so I can discuss what happened with the GP, but a condition of the FH test is that they have to use an NHS provider. I don't want treatment from the lipid clinic, but I do want the FH test to settle the uncertainty. Whatever the result is though, I'm then leaving the lipid clinic and not going back. Any suggestions? Is there an NHS provider where I could just get the test done?

I have really had a bellyful of the scaremongering and don't want any more.

5 Replies

  • Yes, my results took 9 months to come through.

    However, I can see why you want the test. It will give you another piece of information to make an informed choice. I did investigate private testing and I was quoted over £1000 for all the possible genes. Not only that, you would have to arrange for someone to take your blood (not something you can do yourself...well maybe if you were a medic) and then get it transported to the lab.

    You have fought this far for FH testing and I think the NHS is the only route. You don't say if you have children as this was my main motivation for getting/not getting a diagnosis of FH.

  • Hi Traci, the situation here is that I never asked for a cholesterol test in the first place. The cholesterol result came as part of a blood test for something completely unrelated. I was referred to the lipid clinic by a trainee GP who frightened me, and it wasn't properly explained beforehand.

    I don't want to know why my cholesterol level is so "high". It's actually below the FH cutoff point and I suspect the main reason is my weight since it went down when I lost weight. I currently have a BMI of 37.

    I don't want to reduce my cholesterol, though I want to lose weight to reduce the possibility of high blood pressure and diabetes which are much more significant risk factors.

    I want the genetic test to end the uncertainty. Once that's done I don't want anything else.

  • And I don't have children and only one of my siblings will take a statin. My eldest brother went to the lipid clinic once and walked. He is 70, and has not had a heart attack or stroke despite being on blood pressure meds and despite also being possible FH according to my first consultant.

  • well i have just spoken to my GP who was very good and is going to write to them. I have also emailed the Patient liaison service myself.

  • And the other point is the other investigations they want to do are the Lp(a) test. That won't tell me anything about why my cholesterol level is high, it is just another test that is supposed to predict heart disease risk.

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