for someone who has FH cholesterol what is the alternative to not taking statins and still ensure preventative CVD?

[sjan]

ayurvedic, holistic, alternative.

[Wyvon]

If you have inherited FH then your body will always produce too much cholesterol or not eliminate the excess. More exercise helps produce more of the "good" cholesterol (HDL). Eating the correct foods - e.g. onions, garlic, oily fish and products with stenols (e.g. flora proactive and benecol) - will all help. A natural product called Kyolic, purchased from local Health Food shops has helped me for over thirty years. It has no side effects so a six month trial will prove if it works for you. May I suggest you contact HEART UK as they are the charity, set up originally as the Family Heart Association, by families who had inherited the same gene. They are the experts. If you can get to Warwick University in July, I highly recommend that you attend HEART UK's annual conference where you will meet people like yourself and can hear their experiences and ask questions of the experts. Whatever you decide, I wish you well. Since I was diagnosed and started to alter my lifestyle, I have now lived longer than any of my Father's family, by more than ten years - which is where the gene was passed on.

[Wyvon]

ps to my previous, I have just re-read your question sjan "ensure preventative CVD" - that I cannot do but you might be able to do.

[Hidden]

well first of all and really most importantly of all - don't smoke, and if you drink, drink moderately and don't binge drink.

Ensure you get a decent amount of medium intensity exercise, that's exercise that gets you a bit out of breath and sweating but not completely wiped out. Aim for at least half an hour a day.

Get out in the sun when you can to ensure you've got a decent amount of vitamin D.

Try to avoid or lower stress. If you've got a lot of unavoidable stress in your life, try something like yoga or meditation to help reduce it.

If you're a overweight at all try to get your BMI down to at least 28, but preferably 20-25.

Eat a healthy diet with plenty of pulses, vegetables, especially green leafy vegetables, whole fruits, wholegrain, fish, especially oily fish, nuts and olive oil, avoid refined sugar and carbohydrates. Try to eat a good range of magnesium rich foods, or consider a magnesium supplement (be cautious about this because too much magnesium can be bad for your heart, it's really better to eat things like spinach and nuts). Some mineral waters are also rich in magnesium - Badoit is the best.

If you can get a genetic test for FH get one. This will tell you more than anything about what your individual risk is, but also ask your doctors for other tests that may show early signs of heart disease. Your family history is also relevant too.

It's a scary diagnosis, and if you're really worried, it's worth trying statins, but the main thing is to get as much information as you can from your doctors. Practically speaking this isn't always easy, but it's worth persisting.

[sjan]

thank you both wyvon and idontbelieveit. you have both given me lots of information to start with. I certainly will try to get to warwick and make contacts for support but more so to get questions answered.

I feel it is a minefield trying to put all into practice and still be stress-free.

thanks

[YvonneD in reply to sjan]

Great news that you might attend Warwick. I'll be there so ask one of the HEART UK staff to point me out. I was diagnosed over thirty years ago and don't stress about it, as I feel in control. Stress is bad so hope you can relax, once you have all the information you need.

[sjan in reply to YvonneD]

thanks I really appreciate it

[ChasB]

I have benefited greatly from a book by Dr J Fuhrman called "Eat To Live". Had a stent 10 yrs ago -- FH -- I am now free from any medication.

[sjan in reply to ChasB]

thank you chasB - I will look up amazon today. Do you mind if I ask you how you are free from any medication if you have FH? That would be my ideal answer to my family's situation.

[Aliwally]

I know this might sound like an obvious question but do you defininitely have FH as confirmed by a genetic test? How high is your cholesterol?

Also do you attend a lipid clinic? It's just that they could advise you about other drug treatment if you wanted it, there are alternatives to statins. The advice about healthy eating (whatever that is!!) and exercise is good and we can all benefit from that.

[sjan in reply to Aliwally]

Hi Aliwally - I have been trying to get answers for my family. My husband has always had high cholesterol with two attacks and stent surgeries. His siblings are all on statin therapy. my husband was under a lipid clinic but then we found the support was receiving literature what I had already found on the net. My two children have just had their blood tests back age 23 / 25 and readings of 9.2 and 8.3. They are all being referred to Guys lipid clinic and I guess we will see what comes back. In the meantime they have been given autovastatin 20mg but I am just searching and learning for the best way forward for them all.I have emailed Professor Kausik Ray and Dr Malcom Kendrick too for answers as I am trying to be as open minded as possible.

thanks

[Yellowtail]

Please , what is FH cholesterol ?

[sjan in reply to Yellowtail]

hello yellowtail - it is Familial hypercholesterolaemia which is hereditary as opposed to cholesterol that is high from dietary and lifestyle.

[Yellowtail]

Thanks sjan; My remedy for leg pain caused by taking a generic statin is acupuncture and hot sea weed baths.

Yellowtail

[Aliwally]

Thanks sjan

I happen to know that Guys offer genetic testing for FH, so that is good if you want a definite diagnosis. It sounds as if your children have inherited the gene from your husband (50/50 chance). Statins are the first line treatment for FH, especially if there is early heart disease in the family. It is ultimately their decision and lots of people do take statins with no side effects. There are other drugs but not as effective in lowering cholesterol, but there are other choices.

Let us know how they get on at the lipid clinic. Dr Malcolm, I know does not give medical advice on-line (he's afraid of being sued he says!). His web site is informative and ground breaking, but I do not think it is first choice for people with FH as it is generalised by nature.

[sjan in reply to Aliwally]

thank you aliwally I really feel supported by everyone who has commented. Yes i understand that his cause is more for people who have generic cholesterol but I felt with his extensive research in this field he may be able to support or guide a way forward.

thank you all

[Aliwally]

I have just been reading your post on Dr Kendrick's blog, so I will be interested to see his reply. Somewhere on Youtube there is a clip of him talking about FH.

[sjan]

thank you Concerned - I think my frustration is we are vegetarian, no meat, fish or egg but yes to milk and cheese. I home cook 90% of our meals using rapseed and mustard oils and olive oil for salad. I feel I am always looking for healthy options but it becomes incredibly restricitive diet and that adds big STRESS .

[Yellowtail]

After 5 months my leg pain is relieved. Hooray! I had been taking the recommended dose of CoQ10 150mg a day, with hardly any effect. A naturopath suggested that at my size 95 kilo that dose would not be touching the sides. I increased the dose to 600mg with immediate positive effect. I am also taking Magnesium and Vitamin E. For five months sea weed baths provided my only relief from tired and painful legs after taking a generic brand of statin. I'm now back on 20mg Lipitor without any side effects. I have another cholesterol test next month