Familial Hypercholesterolemia

[Heartylass]

I've just been told that my LPa is 239. (Normal is below75). Parent, grandparents and uncle died of heart disease before 65years old. I have an appointment at a lipid clinic and will have genetic screening. I am so scared of dying young. I am only 56.

[Captain_Birdseye]

Hopefully they've caught you early enough to start treatment to stabilise you... FH isn't an automatic death sentence, the important thing is to get your cholesterol stable and under control.

[Heartylass in reply to Captain_Birdseye]

Thank you x

[Hidden]

Unfortunately you have been given the bad news. The good news is your condition has been identified and you have been referred to a lipid clinic and the outcome of that will be you will start an appropriate treatment which will reduce your heart disease risk. My guess is that your deceased relatives were not given that opportunity. Your treatment is unlikely to to be able to reverse any lipid laydown you have already experienced but you may be assessed to see if any interventions such as stents will help your situation, along with medication. All that said most of us on this forum have an increased heart health risk compared to the norm but with the right management plan can still live long, enjoyable and fulfilling lives.

[Heartylass in reply to Hidden]

Thank you x

[Beta70]

Sorry to hear that, I understand how frightening this must be for you with your family history but times have changed with modern medicine and treatments alongside the usual statins. Diet and regular exercise are both really helpful plus avoiding smoking, alcohol, sugar, carbonated and energy drinks as much as possible. I am still very much alive and kicking at 71 even though both my parents and other family members died very young. But we have to remember information and medications were not freely available for them in those days as it is for us all now.

[Heartylass in reply to Beta70]

Thank you x

[Angie06]

Hi, my mother was diagnosed with FH in her60's and is now 94yrs. I also have this and was put on a statin 13yrs ago, I'm now 72 and still leading an active life. 😀

[Heartylass in reply to Angie06]

Thank you xx

[JeremiahObadiah]

I have also felt that fear so huge sympathy.

Knowledge (whilst being unwanted and unpleasant) is , however, power. You now have the power to do something about it and work with medical experts for your own benefit.

I would suggest , from my own experience, that you try to find out as much as possible from the Lipid Clinic/dietician/Drs. Ask questions and read around the subject for yourself. Find out about available medication. Ask about getting a carotid artery scan or any other available checks. Ask about optimum lifestyle, what sort of food and levels of exercise that will benefit you. Maybe ask if there are any medical trials or research programmes going on that you can be part of… you will hopefully stop feeling so overwhelmed by your numbers and get more of an idea of what and how to live well despite them.

Please tell us here how you are and how you are feeling and tell us how you get on with the lipid specialists. I think the LPa numbers are relatively recent addition to general medicine and the Lipid Clinic will know more about that than eg your GP. You can, I understand , speak to the BHF if you need to understand/reassurance along the way.

Best wishes

[Heartylass in reply to JeremiahObadiah]

Thank you xx

[Starwish in reply to JeremiahObadiah]

Hello, can I ask why get a cartioid artery scan please

[JeremiahObadiah in reply to Starwish]

It’s a non invasive test that you might be offered by the lipid clinic. Totally pain free. It looks at your neck arteries to assess the extent of thickening , in comparison with the average person of your age and gender.

I presume it’s a costly test so is not something that is universally done at a certain age-but that is merely my guess.

[Bigscar]

My family history is very cruely similar luckily I was a very fit 30 year old when I was told I had FH.At 31 had a triple bypass I am now 77 playing walking football and other pursuits.Been on statins and a drug regime for ages.But now have seen my 2 daughters and grandchildren grow up when initially I didn’t think I would.

There are lots of cholesterol reducing products on the market with sternals in so ask your clinic if they are worth using. I think in my case statins have been the answer.Also I know it’s an unpleasant thought but get some good life insurance even if loaded as it will be re your condition, for your dependents.

Take Care.

[Heartylass in reply to Bigscar]

Thank you xx

[angel343]

hi i know its hard not to worry , however the lipid clinic was very good when i visited 10 years ago due to same diagnosis, its in my family, i was put on rosavastatin 20mg and since then my cholesterol levels are stable. Sometimes dosages have to alter or different meds tried till right one found but it is really important to take the meds prescribed. I have found it can be easily monitored. I also informed my children to have all test done due to cholesterol and heart issues. Hope all goes well. I was 53 when diagnosed with it, i am now 63 when diagnosed early medication can control it, take care. x

[Starwish]

Sorry to hear that I know how anxious you must be feeling I am in the same boat it is on my mind 24/7. Please let us know how it went at the lipo clinic. I am unable to get an appointment in my area all you get is a letter telling you your lipo a levels and take statins, my GP has requested an appointment twice but he wrote back to her stating no prevention no treatment no cure take statins. I am unable to ask Amy questions!! I wish you well x

[Heartylass in reply to Starwish]

Thank you so much for your reply. Really sorry that no clinic is available near you, I found that this forum and BHF are very helpful and supportive. If you phone BHF, you can speak to a nurse who can give advice and support. Hope all goes well for you xx

[Heartylass in reply to Starwish]

I've had my appointment which was helpful and would like to share the information with you as you can't get to one. 1. Your GP can arrange a full cholesterol screen and LPa test for your immediate relatives who may have the condition. This is STRONGLY advised as early treatment will help to reduce the risk. 2. It is important to address all other risk factors such as weight, BP, smoking cessation, diet, stress etc, in order to reduce your risk of developing problems. 3. Ensure you have your cholesterol level rechecked to see if the statins are working well, they can be increased or another medication added if needed. 4. The consultant said that the aim is that my cholesterol level will reduce to 1.8.. I have an appointment with the dietician and a consultant appointment in 4 months. I hope this information is of help.

[valeriep]

I also have FH and agree with all the advice other members have posted above. Research in this area has taken great strides in recent years. I don’t think my father even had a cholesterol test before he had his first heart attack in the mid-1990’s! I find attending a lipid clinic very informative and reassuring, as I know my condition is being regularly monitored and they are up-to-date with all the latest treatments - and btw, they will not only prescribe drugs, but also advise on diet and lifestyle to keep you in optimal health.