about me.... and my high cholesterol

hi every one,

my high cholesterol is because of genetics... my mum has a condition called familial hypercholesterolaemia which as it happens was passed down to me. i manage my cholesterol levels by taking medication called (lipitor) atorvastatin.

I was tested at the age of 14 and found out I had it when i was put on a clinical trial to see if i was compatible to take the medication to manage my inherited illness. I was and started to take the medication.

During my teenage years I decided that it wasn't ''cool'' to be taking these pills and decided to stop taking them. I didn't feel any different and there fore didn't need to take them.

it wasn't until a few years later that my doctor had requested me to go for a blood test to checks my lipids, only to find that the cholesterol levels had sky rocketed and I was in danger of having a heart attack at the age of 17/18. This frightened me big time and I started to take the pills (at a higher dosage) and started eating healthier and eventually (about half a year or so later) the lipids returned to normal....ish

I will be taking these pills for the rest of my life, but as I now understand the dangers of my condition i'd much rather take a pill every night then risk my life.

I think every one should be tested for familial hypercholesterolaemia. high cholesterol isn't just for people who are over weight or who eat unhealthily. I eat pretty well, i am very slim but yet if i stop taking these pills i could die... people are often amazed when i say i have high cholesterol as they wouldn't think that a man of my size (6''4 and 13 stone) would have any problems with high cholesterol.... makes you wonder whether people really know enough about it.

And now with the UK being one of the fattest countries in the world i think we all need a bit more education.

Thanks for reading

Nathan26 xxx

22 Replies

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  • Hi Nathan26,

    Thank you for your story. Getting an accurate diagnosis of FH as opposed to other causes of high cholesterol proved very difficult for me, even when attending a lipid clinic.

    It is not until you know what you.'ve got that you can make an informed choice about what you want to do...as you have.

  • What further education do you think would benefit UK citizens' health?

  • I think a number of things could help... TV commercials (like they do for the dangers of smoking) maybe even a documentry about the condition... Do you remember when jade goody had cervical cancer? The awareness she caused for her condition saved 1000's of live in the UK because it was all over the news and it got women motivated to get tested. a little poster in a GP surgery could help to a degree but not by much. just a few ideas.

  • Whilst your ethos is admirable, it relies on the lipid hypothesis being correct, and I don't think it is.

  • You sound as though you are one of the lucky people who doesn't get a reaction to your cholesterol medication which can be quite a nightmare as each time you have to change to a different one you have a spell to let one get one let of your system and see how the new one acts or reacts and this could happen quite a few times for some of us it is a pretty no go area and at the same time your messing with your diet which of course alters all your body functions - good luck everybody.

  • I dont get a reaction to the tablets im on because i went through clinical trials when i was younger to get the right medication that worked for me... i was lucky to get on the medical trial because at the time i lived in london where the trial was held, and as my mum had the condition i was a good candidate.

    however, about 4/5 years ago my doctor changed my prescription from atorvastatin to simvastatin and those pills didn't work for me and i requested to go back onto the original pills which work for me. The simvastatin managed to keep my lipids from going up but they were not coming down to the healthy level 4-4.5 they should be.

  • I have become aware, talking to friends in their 80s, that GPs in our area are not testing older folks cholesterol. I thought the NICE guidelines were that anyone over 75 should be regarded as high risk for cardiovascular disease. - Although I believe there is not much concrete evidence to link high cholesterol in women to CVD. Am I correct? Should we be sending the message to Day Centres & clubs for the elderly to 'get your GP to check your cholesterol'? I think many older people have a lot of spread on bread, and eat cakes and pastries at social events, which should perhaps be replaced by fruit (but fruit is not regarded as a treat- which is a pity!). I think older people can be confused about what is a good diet, and what is recommended these days is not what they are used to eating. We need a clear, large print leaflet to distribute.

  • I think every one should be tested, the elderly are probably more likely to be affected by CVD like you said... if the doctors wont test the elderly where you are, then you can always go to a pharmacy. Some pharmacy's offer a cholesterol check and normally costs about £7 this is an instant check using the blood from the prick of a finger... I know that and Morrison's supermarket pharmacy offers a free cholesterol check when you buy a tub of flora butter (receipt required as proof)

    hope this helps some :)

  • Hello puebla, There is a world of difference between those who suffer from FH and those who, over the years, have found their cholesterol figures increasing. As one who is in the "sceptic" group the reason why the older person has a higher level is because they have other health problems that the cholesterol is having to contend with. Cholesterol is a "healing" part of our body that is increased to stave off any other problems of the body that needs its help.

    Making an asssumption that "older" people have a bad diet and should make changes is all very well but when a woman in her 90s (my mother in law) has always taken sugar in her tea, eats real butter, bacon, eggs, red meat, fruit, vegetables and cakes all her life and the only health problem she has is glaucoma and a tendency to deafness makes that argument a bit redundant. She has NEVER smoked, and drinks very moderately, (a glass of sherrry on a Sunday) and still lives in her own home!!

    We all need to eat a good diet, keep of the "rubbish", stop smoking and cut down on the acohol, but do not penalise the elderly for their health problems. They have lived a good life and if they are having a cream cake for tea, so what!!

  • I think there is evidence to show that high cholesterol levels are actually protective in the over 75 age group. I will post when I find.

    Actually, I would feel very uneasy about a low fat diet for the frail and elderly. They need all the calories and building up they can get.

  • Here, here! Aliwally - when a woman in her 90s (my mother in law) has a few "bad" days when she feels under the weather but with no particular illness, she goes off her food. If she decides she would like something "naughty" - why not? As long as she is eating something and keeping her calories up her body can continue to function. It doesn't take much to pull the health of an elderly person down - missing a day or two of food of any type can make it much more difficult to recover from a cold, or flu. You only have to read the horrendous stories of elderly patients dying of malnutrition in hospital because no one thought to ensure that they ate.

    Go well all

  • I certainly agree that under weight elderly people shouldn't restrict their calorie intake. And it seems from some research that butter is not the baddy we have been led to believe. - certainly compared to hard fat margarines. I always bake with butter. It was however sad to talk with one elderly gentleman recently, who, admitting to eating too much of the wrong food, as he saw it, has recently been told by doctors that they can do nothing for his arteries as they are too furred up now.

  • Sorry if I have posted in the wrong place, I was replying to 'Concerned' who asked 'what further education do you think would benefit UK citizens' health?' Now realized most of the blog is about FH.

  • Don't worry about it - I've told healthUnlocked that their site is a bit hard to use, a bit hard to get the replies in the right place, but they haven't fixed it yet. (The "Reply to this" links break sometimes because they rely on javascript, the performance of which varies massively between browsers and networks.)

  • However, atherosclerosis does increase with age anyway. I hope no-one thinks I'm being flippant when I say we've all got to die of something...preferably when we're 75 plus and have led a fulfilled life. I don't see any reason to "scare" the elderly with risk of CVD when risk of death at advanced age is inevitable.

  • Why would it scare them? Haven't most people come to terms with their own mortality by the age of 75? (Hopefully a bit less viciously than seeing a parent nearly die while you're still at primary school, as happened to me.)

  • Hi Aliwally. Don't think 75 is considered advanced age these days. As I get nearer to that age it seems increasingly young!!! My dad was perfectly active and enjoying life at 82, but suddenly had a massive stroke because the GP didn't bother to check his cholesterol often enough and monitor his statins and asprin, - the hospital doctor said it was such a pity because it would have been completely preventable. And maybe dietary advice might have helped a bit I feel.

  • Low cholesterol is a risk factor for stroke in under 40s ncbi.nlm.nih.gov/pubmed/100...

  • Hi Nathan . I have FCH rather than FH- Interesting simvastatin didn't work for you either. When my GP was on holiday a few years ago a different GP in the practice swopped my medication from atorvastatin to Simvastatin when I went to collect a repeat prescription - without checking with the hospital first or reading the NICE guidelines on inherited illnesses- or even reading the original presentations to GP's re statins (from 1996/7) which stated FCH people shouldn't be swopped to simvastatin. My consultant was furious and complained about ignorant and arrogant GP's interfering in what they didn't understand and I 've been back on atorvastatin ever since!

  • I have just been looking at the Patient Decision Aid for statins, as I had not heard of them before. I am having trouble copying the link but for people at " moderate risk", that is 20 % risk in next 10 years, 5 people will be "saved" (from a cardiac event) by taking a statin and 15 will have one even though they are taking a statin. Based on 100 people taking statins for 10 years.

    Please note this is not for people with inherited conditions.

  • I was diagnosed with fairly high choleserol recently, I go to a group practice & none of the doctors there seem to agree about what is the best treatment. One doctor put me on Simvastatin, which made me extremely tired & I stopped taking it. Another doctor then told me that I shouln`t be taking them anyway because I don`t have aby other risk factors for heart disease. I had normal chooleseral until a couple of years ago, & I don`t know why my levels are rising, There is heart disease on my mother`s side of the family, but none of the doctors that Iv`e seen can agree on whether it`s down to genes or age.

  • HI, would you be able to go to a private doctor to check? I took my first statain last night, I am 66, a Sri Lankan, therefore in UK the records shows I am on high risk! for 18 months I tried not taking the medication, life stlye change did not help! I do not konw if I feel any difference in me in 3 months. may be lower blood test numbers! Different GP had different views on medication. My strong believe is, it is to do with age and gene. If the computer say I have 40% of health risk, where did the data come from?, all from Sri Lanka? Can a GP work on list of best food to eat?, no have ot go somewhere else to find this out!!

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