How can I get my GP to refer me to a lipid clinic

[AndrewP]

I'm 42, always exercised a good deal ie most days, always had a good diet ( even better now following heart uk advice) and never overweight. Never smoked.

Diagnosed with likely FH 2 years ago. Total chol 8.6 but with a LDL/HDL ratio of 5.6/2.3.

Prescribed simvastatin 40mg and now atorvostatin 10mg. Last test chol 4.8 LDL/HDL ratio even better LDL up to 2.4

for past 6 weeks I've had interrupted sleep every night. I'm sure it is statin related.

I want to come off statins but GP reluctant to refer me to lipid clinic for second opinion or further tests. I'm scared to come off and my wife is very reluctant for me to do so. Any advice? Experience of no statins or how to get to lipid clinic welcome. Can I go private even?

Thanks

[AndrewP]

Sorry, last test HDL up to 2.4, I wish LDL only 2.4!

[Aliwally]

Hi AndrewP,

I was in a similar positon to you 4 years ago with similar levels.

I however was fortunate enough to ask to be referred to a lipid clinic. Two reasons...I couldn't live with not knowing whether I had FH or not and I was worried because I have 3 daughters, one with disabilities and I wanted to know whether they had it. I don't know if you have children, but this might be a pretty convincing reason to put to your GP.

I have to say that I automatically presumed I would be offered a DNA test at the lipid clinic, which is the definitive way to diagnose FH if you don't have any signs such as xanthomas (I was more ignorant of all things lipid in those days!). I digress, lipid clinics are much more expert than GP's and may even offer you DNA testing if you want it, but this depends totally on the hospital. You could push this angle as well.

I went to see a consultant privately after the NHS clinic kept giving me conflicting advice about whether I had FH or not. I had only been in the room 5 minutes and he said "I don't think you've got FH"...relief and the best £200 I've ever spent plus he wrote me a really detailed letter explaining everything.

To finish, the private consultant told me that DNA testing is prohibitively expensive and most medical insurance companies won't fund it.

[DakCB-UK]

Interrupted sleep is sometimes a side effect of Simvastatin or Atorvastatin I think. Wish I knew how to get referred: took me 5 years last time. I was refereed by a new younger GP in the end.