I have FH and am in a quandary regarding diet following recent revelation that there's no link between high cholesterol & heart disease?!

I was diagnosed with familial hypercholestrolaemia (FH) when I was 4. I have never really done much to actively help my FH (as a child I was on a low fat diet and I've always been very sporty and fit) but as my levels are now very high (in the 8's I think, and I have a large fat deposit on my eyelid) I am beginning to think about what to do next. My doctor only ever recommends statins and although I saw a cardiac specialist as a child, I have never been re-referred.

My brother is a personal trainer and nutritionist, and he reads a lot about pioneering research into cholesterol levels and heart disease. He tells me that there is no proven link between LDL and heart disease. I am beginning to think about taking a more concerted effort into diet, but he tells me a high fat/low sugar diet is a good thing and I don't have anything to worry about. I have been eating full fat butters, milks, cheeses and eat large quantities of eggs, avocados and oily fish, and have seen my cholesterol levels rise quickly. I am now worried that I'm doing the wrong thing. I like organic/natural eating, and don't particularly want to eat low fat substitutes as I know they contain so many chemicals. I'm a bit lost.

I don't want to be playing Russian roulette with my health but don't know what to believe. I know our knowledge about health is changing all the time. I don't know where to start with my research, am very anti taking pharmaceutical intervention (I am still only in my 20s), but at the same time don't want to risk my life in the process!

Any advice would be greatly appreciated.

19 Replies

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  • Ultimately you should sort your health care with your GP.

    It’s unclear from your question as to the timeline of events. Have you had the lipid deposit on your eyelid when you were eating low-fat? Is that what prompted your diet change (along with your brother)?

    Most people find very little change in blood cholesterol from fat in the diet, and you’ve lumped together milk (that contains lactose) with other high-fat foods, so presumably there are other things in your diet that we aren’t aware of?

    You also mention full fat butters for instance; what other kind is there? Spreads/margarines may be reduced fat or high fat.

    You said your brother approved of a high fat/low sugar diet; is that what you are following? What other carbs do you eat?

  • Have you seen this blog - heartuk.healthunlocked.com/... ?

  • Hi there, thank you for your response. I have noticed the fat deposit on my eyelid only since switching from low fat dairy products (olive spreads, skimmed milk, low fat cheese, etc) to the organic un-tampered-with varieties, which I started to do about 2 years ago, and this is when my GP said my cholesterol levels had elevated. To be honest, as you've noticed, I'm not very clued up about diet and hence my concern, as I'm turning 30 next year and think I need to prioritise this now as I have FH.

    I generally eat a well-balanced diet but as I work a very labour intensive job I tend to always eat sandwiches and crisps at lunch whilst on the go. Eggs for breakfast, or try to get some protein in to keep me going, and always a pretty healthy dinner (meat/fish and green veg). Carbs wise: the lot at the moment, simple and complex, but am trying to cut down on starchy carbs in favour for the carbohydrates found in green veg.

    My brother is adamant that GPs are not likely to know too much about nutrition and follow a very traditional route to healthy eating (the national standards pie diagram - do you know the one I mean?). I am going to look at the blog you suggest now.

  • I understand your fears of saturated fats. We have been warned of the dangers for many years.

    Consider that the body doesn’t need to consume saturated fat to make body-fat or cholesterol.

    Whilst nature isn’t always kind to us, is it reasonable to think that we have natural tastes that are bad for us, that we haven’t learned in 2 million years of evolution that meat and fat are bad for us, but since the development of chemically extracted rapeseed and soya bean oils we have become educated? Bear in mind that we used to be told to cut back on cholesterol, and are still advised to eat fish in preference to meat, when in fact fish tends to contain more cholesterol.

    Is it still reasonable to assume that the carbs you’re eating, that usually require processing to be edible, are harmless when we eat them in quantities that could not occur in nature?

  • If this comment was on facebook I'd "like" it!

    We have wandered so far off the path of natural evolution since first world 'development'; all our common sense has fled out the window as we've been bombarded by commercial advertising. A good guideline might be: the more that has been 'done' to it to make it edible, the less you should eat it!

    I always feel so much better when I have no refined sugars/carbs, plenty of fresh, seasonal veges/fruit, nuts/seeds and yummy red meat! And the only dairy intake being a spoon of natural, live yoghurt and a bit of hard cheese.

  • GPs generally know little about nutrition. I asked one how much they do during their 7 years of study. He replied 5 hours. I said 'per week', he said no, in total. Their knowledge is wrapped up in the food pyramid which we all know is damagingly wrong.

  • If you have FH my personal opinion is that you should be under the care of a "specialst". You might not agree with them all the time (I don't!) but at least as Traci says you can get all sides of the picture. Do you have a history of heart disease in your family?

    It is also possible to get your cardiac risks fully assessed at a lipid clinic. The fat deposit on your eyelid might be the result of accumulated cholesterol deposits .

  • Thank you very much for your responses. Traci and Aliwally, I didn't know I would be allowed to be referred to a specialist on the NHS as I don't have any acute symptoms or complaints - but that would be amazing. GPs I've had in the past just suggest statins then when I decline they doesn't say any more.

    Really appreciate your help. I will ask next time I'm at the docs.

  • Suggest you take a look here:

    Frank Cooper has FH, is in his sixties and does not take statins.

    Perhaps contacting him might help.

  • But for every Frank, there may be others with FH who have had coronary events in their twenties. My advice would be to see another GP in the practice and insist on being referred to a lipid clinic. I am all for exaggeration to get what you want...if you know what I mean.At least a lipid clinic will give you an accurate baseline and then you can decide about diet.

  • You say that you where diagnosed with FH when you where 4 which would suggest that there is a family history?

    I have FH I suffered a heart a heart attack at the age of 24 before you ask i was 9 stone have never smoked and was a member of the british Army orienteering team I did ultra distance runs as welll as kayaking and mountaineering.

    I am now 47 and still compete in triathlon (sprint distnaces now!) and I follow a low carb high protein diet as organic as possible. I also visit a lipid clinic every 6months and I take statins beta blockers etc etc why do you think that its an either or choice?

    you can if you wish do both?

    I agree with your brother in one respect most GPs are less than useless but you must INSIST on a referral to a lipid specialist especially if you have already been diagnosed with FH there is clear guidance on this from NICE.

    Keep training, look at your diet and do what works for you but I would say do not write of the medical establishment completely.

    My son has been diagnosed with FH when he was 14 (5 years ago) hes very fit BUT after much debate and as we watched his levels continue to rise he decided to go onto a statin to help control his lipid levels. I have to say as someone who was lucky to have survived at 24 I was pleased. He like me follows a low carb no sugar diet and we both train extremely hard in fcat I will be doing another triathlon in September in aid of HEART UK.

    THINK carefully and educate yourself there is alot of conflicting advice and actual truth is not necessarily yet known so keep reading and asking and you can of course always change your mind later this is not your brothers decision nor is it your GPs its yours.

  • I think you should see your GP and ask for a referral and question whatever treatment you are given. Before you go make a list of all the questions you would liked answered as we all forget the things we want to know once faced with a specialist. Let us know what is said and your results.

  • This is no recent revelation... maybe recent to you, but not in general. The link has never been proven. That's why it's called the lipid hypothesis, not the lipid link or lipid fact. You place your money/life on the grid and you take your chances.

    As you may see elsewhere on this website, I'm sceptical about high-fat diets for two reasons: firstly, I suspect FH sufferers may react differently to the general population, just like we react to some cholesterol-lowering medications a bit differently; secondly, the production processes of many of the so-called "natural" things advocated in high-fat diets are not really very natural, like butter and cheese: cows do not churn their own milk until it emulsifies! Today's factory butters are also often very processed and higher in fat (80+%) then old-fashioned farmhouse butters (about 70%). I think it's because a higher fat content stores better.

    The large fat deposit sounds like xanthoma, a cholesterol deposit occurring where it should not, a common symptom of FH but usually not in itself harmful. I echo the comments above: I'd get referred to a specialist if I were you. FH is a chronic illness and merits referral, especially if you're noticing symptoms. The HEART UK website has a map of lipid clinics, so you can even take details of one or more to your GP.

  • Some good points there.

    I'd just like to ask, after all the money that's been put into trying to prove the lipid hypothesis, aren't the odds of finding 'the smoking gun' looking a little slim?

  • I don't think so, at least among FHers. Despite all the money, there's not been all that much research delivered, for various reasons (relatively high recruitment costs, maybe publication bias, ...). Also, there's even less evidence that the medication shortens life if you don't experience side-effects, isn't there? Whereas there's some correlation between detected FH and shortening, as far as I know at present. Whether that's a causal link (and in which direction!), I don't think is shown yet.

    Not an easy decision to balance, but one we must each take our best shot at.

  • Chorley-Joe, wow your story has really opened my eyes. I'm so pleased I've made contact with people who 'know.' 2squirrels and DakCB-UK too, thank you. I feel so silly. Can you believe I'm a healthcare professional myself??!

    I've never taken my condition seriously at all... I've always been a size 8, have consistently weighed 9 stone since I was 18 and have always felt invincible. I am very active too: I am a long distance swimmer and my husband is an ironman triathlete so I try to keep up!! I just always feel healthy so didn't take any notice of my FH.

    My Dad had my brother and I tested when we were very young as he had high cholesterol (no one knows if his is FH or not as less was known then), and my levels were in the teens when I was a child. They went down with a very controlled diet by my wonderful Mum, but of course since being an adult I have neglected to continue being careful. Although my normal daily diet is good and healthy, I binge on fast-food, eat out a lot, and have a wine-heavy social life. I KNOW I need to start making some changes.

    Anyway, enough of the life story. I am going to make an appointment with my GP and request a new blood test (its been 3 years... I know, I feel so bad now) and a lipid clinic referral.

    Action stations.

    Thank you all, will keep in touch.

  • Good luck! It sounds like you may be able to make some inroads by diet changes and it would be interesting to know what % cut you achieve by diet alone.

    Fast food binges - for whatever reason, whether it's saturated fats or trans fats or carbs or good old calories - do seem to be especially dangerous and I'd take care what I ordered if I ate out a lot, but I seem to prefer stuff like oily fish and pulse-rich peppery herby salads anyway and I'm not sure if that's psychological or physiological!

    I think there's a small silver lining on the wine, too: a little wine is thought to be helpful, so take the opportunity of reducing your consumption to have one or two glasses of nicer wine, then switch to waters or juice and it should offset the increased cost too.

  • I have a friend who has Familial Hyperlipidaemia - inherited high cholesterol. He swears by Vitamnin B3 Niacin (not to be confused with the non flushing nicotinamide which doesnt work. He takes a high dose 500mg/day and say it dramatically reduces choleterol within weeks.

    Side effects a burning flushing to the skin like stinging nettles but it only last 1/2 hour. Its a histamine reaction but the body becomes acclimatised over a few weeks. Can take anti histmine 1 hour beforehand to reduce the discomfort

    It can encourage gout in susceptible persons - check uric acid first, take allopurinol to clear the system.

    Why wont the NHS recognise this nearly harmless therapy - no profit for anyone?

    It cost £10 for 3 months, can buy on internet (Solgar). BTW Im not pushing this supplier, just where I got it

    Any other experiences?

  • Hi guys,

    So the latest update is I did what you suggested and went for a lipid clinic referral...amazing how long it has taken for all the tests and results to come through. Turns out my C-IMT (carotid intermediary thickness?) is significantly high, over 75th percentile and I have a high risk for CVD. They want to put me on statins.

    I feel very sad and a little scared, but as we're trying for a baby at the moment I don't want to take any drugs.

    I've just posted a new question in the forum, but this is mainly a repeat here. I'm already eating healthily and exercising well. Don't know what else I can do really...!

    Thanks again for your help last year. :-)

    x

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