Lipid Specialist: I had two heart... - British Heart Fou...

British Heart Foundation

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Lipid Specialist

Carokai profile image
5 Replies

I had two heart attacks several years ago, one caused by Cholesterol plaques and the other by Vasospasm.

Because of my family history and my own high Cholesterol and high Triglyceride issues it was assumed that I had Familial hypercholesterolemia.

I have been seeing a Consultant specialising in Cholesterol issues for two years and have been through the treatment protocol of Statins followed by one of the new PCSK9 inhibitors (Praluent) Unfortunately I can’t tolerate Statins and have reacted very, very, badly to Praluent.

I have subsequently been part of the Genetic Testing project at Great Ormond Street and have discovered that I do not carry any of the known familial hypercholesterolemia genes.

My Consultant has no suggestions as to where we go next apart from risking trying an alternative PCSK9 inhibitor.

Because of the way I reacted to Praluent I am scared to do that (once you inject the drug is in your body for two weeks and I had a very scary reaction to my 5th dose) and now want a second opinion. My GP has agreed that we need to find someone who may be able to advise what else could be causing my high Cholesterol / Triglyceride issues. In that she believes we should be looking for expertise in the most recent developments in the Lipid arena.

Would anyone be able to recommend Consultants we should be approaching? My GP has said she is happy to refer me out of my area (Yorkshire) and I am happy to travel.

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Carokai
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5 Replies
MichaelJH profile image
MichaelJHHeart Star

PM sent as I feel it inappropriate to post individual consultant's details on open forum.

jimmyq profile image
jimmyq

You could ask your doctor about coming off the statin and replace them with nuts. They work just as well and no side effects:

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

You could email these links to the doctor to back up your case.

Carokai profile image
Carokai in reply tojimmyq

Thank you for those links.

I cant take Statins and eat nuts regularly (I am Vegetarian). Unfortunately my Cholesterol level is still sky high !,

jimmyq profile image
jimmyq in reply toCarokai

Vegetarian? Try cutting out the milk products for a few weeks and then ask your GP for a cholesterol retest. I have been vegetarian most of my life and couldn't drink milk because of sinus issues. Cheese & butter blocked my arteries up.

Go on, take that next step and go WFPB!

Hi Carokai - I have FH (confirmed genetically) but have been intolerant to statins (also confirmed genetically) and just started on PCKS9 injections. Recently I have just found out that I also have high Lipoprotein (a) levels which also increase my risk, and have developed CHD. Might be worth checking your LPa levels, simple blood test (but not performed as part of your regular lipid screening). Also found the information on HeartUk helpful as it's only an emerging risk ares so not much known about it at the mo. Hope you get some answers

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