Treatment for Familial Hypercholesterolemia [FH]

[Wildhoney]

Hello, new to this site and was wondering if anyone has had a similar experience to me?

I had a heart attack at the age of 37 and was eventually diagnosed with FH [my cholesterol was 11!]. I assume I inherited the condition from my father who had several heart attacks and eventually died from one about 4 years ago, I have unfortunately passed the condition on to my eldest daughter who is now 13.

I have been on Rosuvastatin as well as Ezetemibe for my Cholesterol for many years as well as Ramipril and Bisoprol and it has been managed around the 5 mark, still a little too high for me but better than the double digit back in 2007. I see a consultant once a year at UCLH in the lipid dept to keep an eye on my health, bloods etc. On my last visit my weight had increased somewhat and consequently my cholesterol had risen slightly, my LDL was 3.6. I had been told by the consultant that a new drug specifically for FH was on the market (Praluent is one name) and the base level LDL for approval was 3.4, therefore in theory I qualified but that the panel who decide would not allow it me as my cholesterol would fall if I lost some weight and that is the preferred method. This has caused me some anxiety and stress (not ideal with a heart condition) as I do exercise regularly and try to live well but at the age of 48 it's getting harder to keep weight under control to the extent they wish. I appreciate the NHS has budgetary constraints but as I had a heart attack so young and try to fulfill all the health criteria to prevent another that I should be given the medicinal help as well. This would not least alleviate some of the stress of constantly checking my weigh, something I never did before knowledge of this drug. Has anyone else experienced this? Or indeed are on the drug, as it would be good to know the qualifying criteria. Sorry for the long post and thanks in advance for any replies.

[Zena166]

Hi. Welcome to the site. I too have been diagnosed with FH and had a heart attack last year and am seen in the lipid clinic in Newcastle annually. I follow a strict vegan diet as I struggled with taking statins and am allergic to 3 different ones. So I have found one that is ok but I just put up with having numb feet.!

Since following the plant based diet I have lost 35kgs (5.5 stone old money!) and my cholesterol is now just below 4 which is a great improvement. It maybe worth a try if you’re unable to get the changed medication.? Hope it gets sorted for you. Take care. Zena

[Bazza1234]

I have had very high cholesterol levels for many decades. 35 years ago I was told that my total was 10.5 - and then for the next 3 decades it was round 8.7. I have now got it down to below 4 and LDL below 2 (1.67). It has taken me two years to get down to these levels from the 8.7 - firstly with Rosuvastin 5mg increasing after a while to 10 mg and now 20 mg with 10mg of Ezetimibe. Five years ago I took up long distance running as a hobby/interest - and regularly run 20-30 klms per week increasing to 40+ if training for something specific. Unfortunately, I have not found this amount of exercise to lose me much weight at all nor did it have any effect on my cholesterol levels.

If you go out for a 1 hour "jog" - you will burn up around 300-400 calories. That is about only 2-3 ounces of milk chocolate . I'm afraid that you are going to have a really good look at what you are eating to lose some weight.

[jobe1968 in reply to Bazza1234]

I agree it takes much care to really control your food intake and balance with calories out to maintain a steady weight. I was losing weight directly after heart attack just by stopping drinking and eating a health focused low fat diet. Then I hit a plateau. In order to break this I added extra walking and started to weigh the food I take. All very boring but it worked. It’s hard to portion control for me by eye after a lifetime of over eating.

Part of the problem regarding diet is there are so many conflicting arguments. Doctors are not given much nutrition training and the Internet is a mine field of information, fact and outright fantasy. Care is needed to navigate.

I am on a predominately vegetable diet, with whole grains etc. but I still eat fish and some chicken. For me the evidence of the plant based diet is strong but I don’t think complete veganism is required or sustainable for many. So while the bulk of my diet is vegetarian I still enjoy some good quality protein in the form of fish and chicken.

There are some really good books and films regarding diet/lifestyle that seem to be gaining mainstream acceptance.

Forks over knives

China study

30 day heart tune up

All are useful, although I think some of the recipes need a little more something to make a meal. Be prepared for raised eyebrows from your GP.

For me diet and exercise supplemented by Statins seems to be working if last bloods to be believed. However some hereditary cholesterol conditions require other meds than stations. As with Zena I am seen by a lipids clinic I found the consultant here the most informative of all the doctors I have seen during my recent journey.

On the issue about treatment being withheld due to the potential of weight loss, I would seek to demonstrate a serious attempt at this, food log etc. while still pushing for treatment. We have to push in the system to get positive results sometimes. Good luck.

[kel55]

hi, in 1986 my father had his done and it was 13 and was given 6 months, hes now 83. l then had mine done and uptill about 7 years ago it was always around the 6 to 6.5 mark. it was explained to us that we control the results. If we have fish and chips then things shoot sky high but come down with in a few days, other people it may take a few weeks for the same meal. Docs wanted it down but never really pushed, l then got a heart complaint and heres the twist my arteris are virtually fat free but as a matter of cause they put me on simvastin. I have watched how much fat l eat ie them life style changes, grill instead of fry etc and now very little salt but l still eat my fish and chips when l want to. I did have 2 heart attacks in 2016 but nothing to do with fat? I do however collect fat in the form of lumps under the skin

[BushBee]

I had a similar problem and ended up going to Slimming World. The meals they recommend are all very heart healthy and are similar to the recipes you'll find on the BHF website. The Slimming World website will give you more info and tell you where your nearest group is.

Talk to your GP about your need to lose weight and you might be able to get a referral to Slimming World which would cover the joining fee and the cost of the first few meetings if money is a bit tight.

[Springray]

Your post is very touching because it involves your family situation. If your goal is to prevent heart attacks for yourself and your 13 year old daughter, then no question (as Zena and others have said) a wholefood plantbased (WFPB) diet is advised. Added bonus: steady weight loss is normal on that diet.

Start by watching Forks Over Knives (FOK) together as a family. It features Bill Clinton's medical advisers. He has managed to prevent further heart troubles since following the plantbased diet. On this diet you can eat to fullness because plantbased foods including beans and wholegrains have a large volume but low calories and so help you feel full.

The advantage of the diet is that it prevents furring of the arteries in all parts of the body including the heart and the brain and so you are giving yourself and your daughter the best possible health advantage going forward. (A heart bypass or stents can only ever fix the few arteries they choose to fix but furring will be going on in other arteries silently too if LDL cholesterol stays above1.8).

The doctors are wanting to see diet changes from you first because diet changes are proven to lower cholesterol and prevent further furring (because if your cholesterol has been high and you have Familial HC then there will be furring).

Join the free FOK group on Facebook to get support as you move towards a better diet. Get your daughter to join too.

The End of Heart Disease by Dr Joel Fuhrman (published 2015) is a good book to both read too (and maybe get your partner to read also).

Dr Joel Fuhrman is coming to UK to speak for the first time on Sept 27th (London) -google the event. Come along with the family if you can. It could change your future.

The best thing about changing your lifestyle is that you will get your energy back, and the fear of further heart disease will go away as soon as you start to see your cholesterol numbers come down (and your weight loss).

You can do this for you and your daughter. It's in your hands. Good luck.

[Rob6868 in reply to Springray]

He's not on the plant based diet any longer

[Wildhoney]

Hi, thanks so much to all who have replied so far to my post regarding FH, I appreciate your time and effort. If I could give a little more context regarding my weight etc.. two years ago when I visited my consultant my weight was about 14 st, I'm 6'3" so that isn't overweight, when I last visited I was nearer 16 st, so, yes pushing into danger territory although in that time I had taken up running and aim to run on average a marathon distance every week (26 miles) so I had increased my muscle mass somewhat but admittedly not by nearly 2 stone. That weight has fallen somewhat now although I am not sure to what at present. I eat healthily in the main and exercise regularly but my understanding of FH is that it isnt affected by weight, I have an acquaintance who also suffers from FH who has been told he must gain weight, his LDL was nearly 8 but has been put on the new drug Praluent and it has dropped to below 1! I suppose my issue is that I could go all out to lose maybe a stone or more but my LDL may drop by less that one tenth of a percent, maybe a little more. These new drugs are there to specifically target people with my genetic mutation and then those individulas can get on with there lives and obviously make sure they continue to live heathily. My consultant has told me that it will be nearly impossible to reduce my cholesterol to below 4 through my current drug regime and diet, but I know the new medication will achieve this. It would be great to hear from anyone on these new drugs as to how it has affected them, but in the mean time I will keep working on my weight and exercise and hope for the best with my levels, thanks again to all who have posted.

[kindredSpirit]

Hello Wildhoney,

I am from the U.K but live in the Netherlands. I have the PCKS9 gene (exon 9) so high levels! I'm 58 years and not had my cholesterol under control till being on Praluent, been on stains for years. My Father died at 47 years Heart Attack thrombosis, my Great Grandad died heart problems 60yrs, my Aunty also high cholesterol around eyes, my Brother had new heartvalve & by pass at 60yrs also has high cholesterol on statins. I'm on Praluent & ezeterol (obligitory to get Praluent) I have been on it for the past year. My total cholesterol was 16.7 and after 3 months of been on it it fell to 4.7! I'm due at the FH/Cardio specialist next week so hoping its dropped a little more. The plus also is my Lpa level halved and is now in normal level. I do advice you to get a Lpa blood test. My Son was diagnosed with high levels when he was 18yrs now 28yrs and still trying to get it under control he's pushing for Praluent but difficult in the U.K. due to cost!

I am a Gluten Free Pescetarian, 5ft 3@ and weigh around 8st 10lb but I'm also on Thyroxine.

Hope this helps in some way.

[Silvertail]

My son has that. It was discovered at age 21, when he had a medical for work. It is controlled by statins.