About a year ago I had a couple of nasty skin infections so I went to the GP for antibiotics and she ran a comprehensive set of tests. As it was before christmas, I didn't bother ringing up for the results but went back because I still had a boil and saw a trainee GP who told me my cholesterol was 8.2, the rest of the tests were normal and the boil would heal up on its own and didn't need any more antibiotics
I already knew my cholesterol was high and wasn't bothered as I don't have any other risk factors, don't smoke, blood pressure fine, not diabetic, and I'd previously had a measurement of 7.4 which the GP wasn't really bothered about because my overall risk was under 20% so I just told her I'd lose some weight and left.
I then got a letter to come back - which scared the living daylights out of me - and it turned out trainee GP had panicked and decided to refer me to a lipid clinic, having realised she should have done this in the first place. I went to see an extremely rude consultant who refused to answer any questions, diagnosed me with 'possible familial hypercholesterolaemia' on the basis of LDL cholesterol plus family history, gave me a prescription for simvastatin and shoved me out the door.
Now there have been heart attacks and strokes in my family, but only in smokers. Not ONE of my non smoking siblings has any history of heart disease/stroke and my oldest brother is 68, and two more are under 60. And they're not taking statins. Oldest brother tried but came off them more or less straight away because of muscle & joint pain.
I refused statins, lost some weight and my total cholesterol dropped back to 7.4 (it may have been slightly elevated because of the skin infections in any case). So I went back to the GP and asked where this left the diagnosis and she has just referred me to a different consultant as it's not her specialist area.
I think I am probably wasting my time even going, am not in the least bit optimistic I will get any sensible information, think I probably do not have FH and even if I have (I accept i may have some genetic tendency to raised cholesterol) from reading around the more sceptic bits of the net, realise that this doesn't necessarily mean that I am at high risk, or that statins will help me.
I'm a mixture of furious and stressed, I work full time, so have had to waste a day's leave to go to hospital as I know I will be stressed to the max after going and couldn't face dealing with an afternoon's work.
I'm absolutely fed up. What benefit am I deriving from this farce, it's making my health worse?
My current total cholesterol is 7.4, HDL 1.3, trigylceride 1.1, LDL 5.6, ratio HDL to total cholesterol 5.7 . I've got normal blood pressure and always have had, am a non smoker, normal fasting blood sugar, I am NOT at risk of heart disease. And I've had a stress test in a PET scanner which came out completely normal.
Nice to see someone pro-active and taking charge of their own health. Bit more of that and the house of cards built by Ancel Keys/McGovern will come fluttering down!
I really enjoy reading your posts and commend your efforts in doing so to help others. I am careful not to exercise my opinion too often on this site - we need a balance of views - but those who know me will know that I consider cholesterol an asset and not a liability.
However to add useful information to this site, I would like to talk about the more powerful statins like Crestor and some recent experiences. I will post that separately so as not to confuse the theme of this post by idontbelievit.
You could ask your GP for a tread mill stress to check you heart, this is to make sure there are no issues with your heart. From my experience of cholesterol and statin, we need cholesterol for our body to function, statin as a primary medication and side effects do not help. I do not belief in computer calculation on risk factor. In my case the computer could not calculate a % number? I am still here.
Infection needs to be addressed very carefully. Good luck.
And breathe ................. Reading your wellunderstood rant I can totally see where you are coming from! You are right. Your cholesterol levels were raised because you had an infection and the body was trying to heal itself! I can also understand why you don't want to go on statins! I would suggest that if you want to avoid the stress of being passed from pillar to post by the medical profession don't attend the appointments, but I have a sneaking suspicion that you are worried deep down. You want to avoid the medication (which I applaud) so I would suggest that you look at your diet and exercise regime and see if you can tweak it to begin a healthier lifestyle. Eat natural foods, watch the intake of sugars and start an exercise regime that you know you can keep up, i.e. walking. All the best to you.
Along with everyone else I would shout no worries and don't touch statins. Your body makes precisely the right amount of cholesterol for you, no more no less, if you are fighting an infection then it's more, if not then less and we are all different but normal. If you have a look at The great cholesterol con or statination then it may make things a little clearer for you. I also think the medical profession needs to wake up, cholesterol doesn't kill and there is no link between high cholesterol and heart attacks, there never has been and they have known this all along.
The link to zoe Harcombe and her very interesting 20 diet myths busted is also an eye opener
Thanks for the replies everyone - I think I need to go back for an appointment to say my piece and get it quite literally off my chest. I'm going to try and rehearse what I have to say and remain calm and deliver it assertively, but I'm determined to say it.
I think the problem is that a lot of GPs are sceptical about statins but are scared to say so, so they just fall back on saying 'well we can't make you take statins', which I already know.
I have already had a stress test and as I say, have absolutely no sign of angina, and a completely normal ECG - I was having some chest pain but it was associated with acid reflux, and that has been helped hugely by seeing an osteopath - my entire upper rib cage was locked and inflamed, and I was also getting back pain which was caused by mechanical issues, the osteopath got it down to shoulder pain - probably caused by computer use!
I'm just really angry about the way people are misinformed on the NHS and would like to do something constructive about it but it seems impossible. Malcolm Kendrick has a really good post drmalcolmkendrick.org/2013/... which explains the problem with current research on familial hypercholesterolaemia. Basically the only people who get identified as having FH are people who have relatives with early heart disease. But we are told that only 15,000 out of a possible 120,000 in the UK with FH have been identified. Well maybe they haven't been identified because they DON'T have relatives with early heart disease.
You can't possibly say FH increases risk of heart disease unless you've identified everyone who has it, or at least used a control group as in the experiment Kendrick describes.
People like Dr Kendrick are doing an amazing job, but they are spitting in the wind against the might of the pharmaceutical industry. But the evidence on FH is sometimes already there anyway and being ignored - there was a dutch family tree study bmj.com/content/322/7293/1019 which shows that mortality in FH is highly dependent on environmental factors. But the NHS persist with the advice that anyone at FH is at high risk and lifestyle measures should not be used to tackle it.
I'm absolutely certain I'm not going to take statins and that they will increase my risk of heart disease, not decrease it because of depletion of COq10. It helps that I've got relatives who think the same way and I can see they haven't got heart disease. Even my dad who did have a heart attack in his mid 50's - solely because he smoked - gave up smoking and lived into his 70's. He didn't take statins because they weren't around. Statins do have a beneficial effect, they're anticoagulants, but so is aspirin.
I think I need what therapists call 'closure' on this, not sure I'm going to achieve it, but I think it would also be helpful if sceptical patients could try to get our voice heard.
I asked heart UK if I could speak at their conference, but they don't seem very keen on having patients as speakers.
I always read your posts with interest, as most of the issues raised would not be issues at all if we were told the truth and left to make an informed, personal choice.
i know how you feel over your health issues,my chol was only 6......and i had to have an opp to regulate my heart beat etc,but it was nothing over the top........my docter was just a waste of time........all everybody was pushing was statins etc,..........i was completely stressed ,as i had lost weight,from 76 kilo,down to 71 and been in a gym solidly for over 6 months,feeling on top of the world..........this was before everything kicked off............it crashed my head big time.........nobody helped me with my diet or fitness,a total insult.......all they wanted to do is push the drugs.........a cheap and insulting system of just treating everybody as just a number on a list...............id never smoked and have always been a very light
drinker..........sadly this is our health system, David
My understanding of FH is that it can only be FH if your total cholesterol is 7.5 or higher and this is from birth, so if it has ever been less then it cannot be FH but could be another inherited cholesterol condition. But as your cholesterol is now 7.4, cant see how they can continue to diagnose you as having the condition. NICE states the Simon Broome criteria for diagnosis which states "Diagnose a person with possible FH if they have cholesterol concentrations
as defined in table 1 (greater than 7.5 total chol) and at least one of the following."
• Family history of myocardial infarction: aged younger than 50 years in
second-degree relative or aged younger than 60 years in first-degree
relative.
• Family history of raised total cholesterol: greater than 7.5 mmol/l in adult
first- or second-degree relative or greater than 6.7 mmol/l in child, brother
It's also total LDL over 4.9, but my LDL is 'high' because it's a calculated figure and my triglycerides are low (which means my risk of heart disease is actually much lower, but never mind....)
I would say GPs are money focused. I had an NHS health check [money for the practice?] and they found hypertension for which meds were required [money for big pharma?]. maybe I'm just a cynic. However recently I accessed my medical notes online and I saw my HbA1c figure was only just below pre diabetes level and nobody had thought to mention it. The dr admitted the number was borderline when I queried it and arranged for a further test which I've just had and I await the result with some trepidation. The nurse who did the test rolled her eyes when I told her!
You have started a very interesting conversation. Could you please Google and print all the information you need before your next GP appointment and have a list of questions ready. From my experience with my GP, if I have printed questions and ask my GP to write the answers there is a respect! When I went to the heart specialist, I had a print out of the heart from the Internet and questions pointing to areas with the use of power point. specialists comment was "Well prepared"! I wrote down all the answers.
This "possible FH " tag really gets my goat. No doctor would turn round and say "you've got possible cancer", they would blinking well investigate it and treat according to the correct diagnosis.
In the absence of extremely raised levels, I mean like 10 plus and physical signs, the only way to get a definitive diagnosis of FH is by genetic testing which is freely available in Scotland and Wales, less so in England.
Like you I was completely spooked by "possible FH" and the effect on my family. I probably have some other inherited condition which means I have high levels later in life. Weighing everything up, knowing that I didn't have FH made me decide not to take statins for the rest of my life (although I do take cholestagel which works in a totally different way).
I disagree with others on this site in the case of FH where there is a strong family history of early heart disease, where statins may be appropriate,but how can you make an informed choice about life-long medication on a possible diagnosis. I also think there should be much more research into FH, especially as paediatricians prescribe statins for children with FH.
I would never say no one should take statins, but only very high risk people should take them. If someone in my family had dropped dead in their forties say and were a non smoker, I might be approaching it differently
I've got a friend whose dad has a very healthy lifestyle, loads of exercise and a non smoker and still had a heart attack. Her total cholesterol was 15, she is diabetic and taking statins. It's up to her, I wouldn't tell her to take them, but she is getting horrendous side effects.
But what annoys me is that we are not being given the whole picture, or anything like it.
Oh and I shall be INSISTING on a genetic test and writing to the health secretary if I don't get one. Under the new QS41 they are meant to offer DNA testing. I have it it printed out to refer to when I go to hospital.
I almost feel sorry for the new consultant - I know a hell of a lot more now, and I'm not going to be fobbed off like I was before.
Thanks. this is very much the issue I have. Using any risk equation, my risk of having a heart attack in the next 10 is less than 20% based on cholesterol + normal blood pressure, non smoker, not diabetic.
However because I have "possible" FH I suddenly AM at high risk and have to be prescribed statins. And if I were to take a test and it turned out I didn't have FH, then I would be back at low risk.
None of which would matter if statins were indeed safe and well tolerated. But they are neither.
I would be very interested to hear the reaction you get about genetic testing. In England It is purely based on whether the hospital you attend has funding for it or not. This is something HEART UK are campaigning for.
I have picked up on your other post about there being over 500 genes responsible. I have heard this (mainly from the first lipid clinic I attended which didn't offer it and then, understandably got in a strop when I went somewhere else).
My understanding from second lipid clinic is, in the UK, there are three main mutations which cover 99% of the cases of FH, all of which are detectable. IMT scans of the carotid arteries can also be a diagnostic tool as second consultant told me FH patients have readings over the 90th percentile for their age. Whether this means they are at high risk, I don't know, but the more information you have, the more you can make an informed choice.
I am not in the business of telling people they are right or wrong about this cholesterol conundrum, just get all the information you can and make your own decisions. It is not easy.
My understanding from second lipid clinic is, in the UK, there are three main mutations which cover 99% of the cases of FH, all of which are detectable.
That's a bit of circular argument though - they are defining FH as people who have those mutations, so of course 99% of people with FH have the mutations!
There are still people though who have genetic causes of raised cholesterol who will not have those mutations, but they are told they don't have FH.
also it's worth saying that QS41 (which only came out at the end of the last year) now says genetic testing SHOULD be offered, so if they refuse, I'm going to make it clear I will be writing to the health secretary (justified because the MP in my constituency died recently and I don't have an MP at the moment).
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