Familial hypercholesterolemia?

My Mums brother had a heart attack at 51. He is slim, fit and healthy, never smokes or drinks. It was a massive heart attack and only last year 10 years since his heart attack he had to have another major operation on his heart or he would die. He was told 10 years ago his heart attack was due to high cholesterol and his sisters should have theirs tested. All my aunties and mum were tested and their cholesterol was high. My mum had high cholesterol on and off from in her 40s. They are all on statins. Some of my cousins were tested and too went on statins, they are younger than I am, I am 36.

I had my cholesterol tested a few weeks ago and these were the results.

Full cholesterol results

Serum Cholesterol - 6.9mmol

Serum Triglycerides - 3 mmol

Serum HDL cholesterol - 1.6mmol

Non HDL cholesterol - 5.3mmol

Total cholesterol HDL ratio - 4.3 mmol

Serum LDL cholesterol - 3.9 mmol

As in my previous post my GP wants me to work on my diet, but I have a very healthy one anyway but I am going to consider a plant based diet to see if I can work on getting it down along with plant sterol drinks.

I told my GP about the family history and he still didn't want to consider statins. Now I did some research about cholesterol today and saw there is a condition that's hereditary called familial hypercholesterolemia. I have no idea if that's what my uncle and my mum have but now I am worried. Does that mean I should be on statins? is that why my uncle consultant told him to have his family all get checked. I have children so I am worried for them as I read they should be tested before age 10 and on statins if levels are high.

Should i be worried? why didn't my GP test me for this? It's sent my anxiety up worried I am going to have a heart attack now. I am 36, 5ft tall and slim build. I have gained some weight over the last 2 years but it was much needed. I was 84lbs all my adult life, I am now 118lbs. So a healthy weight at last. If anything I want to lose a bit. I don't eat any red meat, only tuna or chicken. I have recently started eating mackerel. I have cut out gluten to help my ibs 3 weeks ago. Are there any other diets that help? my gp just said avoid cheese and saturated fat.

14 Replies

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  • and I am confused. Is my LDL (bad cholesterol) the Non HDL reading or the Serum LDL reading on my results?

  • go and research niacin B3 Dr abram hoffer read his book on niacin it works my cardio consultant told me about it all my family use it its the only thing which will sort your LPa out no statin drug can do this dont worry about your total cholesterol number ask for a LPa blood test good luck god bless

  • If you can tolerate Niacin, I couldn't get past 500mg let alone 3000mg a day The flushing was horrendous and felt like sun burn, yes if taken with food or after eating the flushing was postponed, I'd be fine for an hour or so and then start to burn up. I'd have to eat non stop to be able to tolerate it but would then be the size of a house.

  • i had the same reaction so did all my family you have to take it in small amounts and increase it over months and the flushing stops but it works from my blood tests go research it properly and the right type of niacin id rather take niacin than any statin drug good luck

  • I did research it, bought the book and read it and was well up for it, my GP wouldn't support it but I decided to try anyway. I did build it up but probably too quickly. Had to stop because the flushing was intolerable and I had loads of other tests being carried out for other stuff. I do intend to try again in the future as there is no way I'm ever taking statins again.

  • good for you statins are a horrible drug they dont give you a longer life and they dont do nowt to your lpa bloods ive had my lpa blood test and niacin works my own cardiac consultant at papworth told me about it my lipid consultant knows all about niacin and the drug companys know niacin works but they rubbish niacin because they cant pattern it to make money shame more people dont know about niacin it makes me sad when people on here say statins work and they dont have any side effects in there long term they will ive done years of research into statins and ill never ever take it again i hope you try it again but slowly this time god bless

  • Your results are slightly high, according to the new 'normal' range. I wouldn't say they are high enough to be familial hypercholesterolemia. I would suggest cutting out sugar and get your cholesterol levels checked periodically. If familial hypercholesterolemia is in your family then you have a 50% chance of it being passed on to you. If you don't have it your children can't. But you can get them tested to put your mind at rest, I did.

  • i have a diag of fam hyperchol ... all my family on my father,s side had heart probs and my cholesterol is abt 8/9.

    I tried statins for six months but they had weird effects .. depression and sudden suicidal impulses. Your cholesterol reading is prob due to your hypo. There may be other factors, for example, i was drinking loads of unfiltered coffee. filtered coffee is ok but unfiltered raises cholesterol.

    Do you have achilles tendonitis, or do your children? Strangely, it is assoc with fam hyperchol.

    IThere is a genetic test, but it can only rule in the risk, not out, cos they don't know all the genes yet.

    I think you probably don,t have it, but anyway it's not hard to run abcholesterol test on the children privately. I've checked both mine.

  • Yes! My son had tendinitis for months last year I his right calf and was on crutches. Out of the blue. How strange.

    I might check my children especially my son as he's slightly over weight. He's only 12 very tall and gains weight fast.I worry myself what if he has high cholesterol.

    My worry is what if I'm a risk but my gp says I'm not.

    Thanks for your help.

  • Wait till your thyroid is optimally medicated.. give it some time.. it should drop. Then look at it again, you may find it is a normal level.

  • Your on right track w/your diet. I too have familial high cholesterol its been very high since my late 20's and iam healthy and exercise frequent . I have fought taken statins but i am now 44 and its gotten worse so ive started statin now as iam seeing if let cholesterol go too high for too long serious artery damage and artery aging has been shown in me thru a carotid intima study. You would never know by looking at me... statins iam on cause insomnia for me and i have too figure if i can take it earlier or a different one. Sorry for rambling on.. just wanted to reach out b/c this condition truly saddens me and iam so sorry your havin to deal too. Pls be in touch if yoy wish..

  • Hi Based on what you have said, you need to be referred to a lipid clinic for proper assessment as per NICE guidelines. In a lipid clinic you will be assessed and receive the correct advice and support and be counselled before you have a blood test to determine if your high cholesterol is genetic.

    If you have high cholesterol is caused by genetics the treatment is a statin. There are not many genetic conditions that can be treated with a tablet, but this one can.

    If you are tested positive then family members would have the option to be contacted and invited in for genetic screening, the lipid clinic usually follow a family tree. They would then have a choice if they wanted to be tested.

    They do test children as young as 10 and sometimes their cholesterol can be very high. But better to be treated for familial hypercholesteroleamia at 10 rather than many years in the future.

    Its about looking after your future health and future generations. Remember it may not be genetic.

    Keep looking after your health, never smoke, take regular exercise this could be a good walk with the children most days, have good fats not bad fats, eat legumes like chickpeas, lentils, butter beans, pulses, have a handful of nuts at least 4 times per week, especially almonds and walnuts. Cut out sugar as much as possible. Cook with rapeseed oil and use olive oil for salads. Eat more types of fish, salmon, tuna, trout, sardines, kippers and all types of white fish are good for you. Have chia seeds which are high in omega 3 and calcium. Don't drink too much alcohol. Choose wholegrain rice, pasta and bread. Eat at least 5 portions of fruit and veg a day. More vegetable is better. If you juice any fruit and veg they only count as 1 of you 5 per day.

    Maybe snack on houmous and carrots.

    Try sweet potatoes instead of white potatoes.

    Avoid processed food especially meat as much as possible as they are high in salt and fat. Cut out fizzy drinks. Don't add salt to your food, use herbs and spices to your food instead. Get some good recipes and try some new dishes. Its important to have a healthy balanced diet from all food groups. Drink plenty of water.

    But its ok to have something that you like on special occasions and maybe a treat on weekends.

    Make sure you spend time to relax which is also very important, it can take sometime to really get into the habit of making time to relax every day, try and have a relaxing shower, or try some yoga, go for a walk somewhere quiet, peaceful and green!

    Involve your children with the cooking and its a great way to educate them at a young age about eating a healthy balanced diet and get them interested in cooking. Get them to choose foods from all the colours of the rainbow when you go shopping.

    I would go and see you GP and ask to be referred to a local lipid clinic, get the right advice from the Lipid specialist not your GP. Also check out the Heart Uk website and BHF website there is a lot of useful information and advice on both these sites. Also NICE as guidelines for high cholesterol.

    Also if you are having IBS discuss this with your GP, if you feel gluten is irritating your stomach it would be better to have a blood test you make sure you haven't got coeliac. But if you were tested you would need to be eating gluten for the test to be accurate.

    Loads of gluten free products have a lot more ingredients added to them and are more expensive. Don't avoid gluten unless you really have to, gluten is in loads of different products.

    I hope this is helpful. All the best.

  • Familial Hypercholesterolaemia (FH), is generally caused due to gene alteration. It might be due to the alteration of LDL receptor gene, APOB gene or the PCSK9 gene. A genetic test is the best way to find out if you have FH as it shows which gene is altered and helps the GP to plan the treatment accordingly. Genetic testing is expensive.

    Due to FH the liver is unable to remove the excess cholesterol from your body as compared to a person without FH. Taking statins helps the body to remove the excess cholesterol from the blood. Statins usually work by blocking the enzyme which is required for the production of the cholesterol. This helps the normal genes to work harder to remove the excess cholesterol from the body. Statins help to stabilise the plaque deposits in the blood vessels, prevent them from bursting which might lead to heart attack or stroke.

    Along with statins you can also follow a healthy and balanced diet with fruit and vegetables.

  • Familial Hypercholesterolaemia (FH), is generally caused due to gene alteration. It might be due to the alteration of LDL receptor gene, APOB gene or the PCSK9 gene. A genetic test is the best way to find out if you have FH as it shows which gene is altered and helps the GP to plan the treatment accordingly. Genetic testing is expensive.

    Due to FH the live is unable to remove the excess cholesterol from your body as compared to a person without FH. Taking statins helps the body to remove the excess cholesterol from the blood. Statins usually work by blocking the enzyme which is required for the production of the cholesterol. This helps the normal genes to work harder to remove the excess cholesterol from the body. Statins help to stabilise the plaque deposits in the blood vessels, prevent them from bursting which might lead to heart attack or stroke.

    Along with statins you can also follow a healthy and balanced diet with fruit and vegetables.

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