New member - any similar experiences?

[vanGaal]

I have been treated for high cholesterol (FH) since I was 18 (23 years ago) and have always suffered side effects that put me off taking medication. The worst has been statins (in all forms) with muscle pains that stopped me playing football & running. My cholesterol levels have been jumping up & down (from 7.0 - 11.2) with the highest level recorded after sticking to my medication rigorously for a year in spite of terrible aches and pains. At my latest appointment my consultant basically said that he is out of ideas and that I must decide whether to take statins or accept having a 50% more chance of having a heart attack by the time I am 50! Not exactly encouraging. I have to decide now if I can commit to taking the drugs, accepting the side effects, or suffer the (possible) consequences. At the moment I am very confused (especially with a lot of negative hype about statins) & quite frankly scared! I have a wife & three young kids and have a responsibility to them also!!!

[DakCB-UK]

OK, I'm probably asking the stupid but: have you really been through all the statins? (Rosuva-,Atorva-,Simva-,Prava- and I think I've missed one... Simva seems to work for me even though it's reportedly one of the worst, whereas I failed with two "better" ones, so it's worth working through. Although I have had problems with Bristol Simvastatin, whereas Kent seems fine so far.) Have you also been through ezetimibe, bile sequestrants and niacin? Fancy putting yourself up for clinical trials? (Not sure if any are recruiting at the moment, or if you'd match their profile.) Are you on the Ultimate Cholesterol Lowering Plan diet? I'm not sure if it would have any bearing, but have you been genetically-tested so they know exactly what FH you have?

There do seem to be real problems with some statins for some people, but there also seems to be a lot of hype (both negative and positive). Muscle pains I'd definitely want to avoid, given some reports, but maybe some treatments will have tolerable side-effects.

I wish you well and hope you find something that works for you.

[Aliwally]

Hello vanGall,

I totally and absolutely sympathise, as I have had trouble tolerating statins. Three things spring to mind. Has it definitely been confirmed that you have FH?

Also, when your doctor talks about a 50% more chance ,is he talking in relative or absolute terms. This is 100% not to discourage anybody with FH from taking statins, I just don't know what your absolute risk of a coronary event is compared to the normal population.

Thirdly, have you ever had an IMT scan of your carotid arteries? I ask this because mine showed that although I have slight thickening, I don't have any narrowing which would indicate plaque build up. This has reassured me that I have a bit of leeway to adjust medication and hopefully keep it low. If on the other hand it had shown considerable narrowing I would probably just put up with side effcts for my children's sake knowing that statins are probably stopping it from getting any worse.

I don't think there is a definite answer to this....other than finding out why some people just have difficulty tolerating statins while others take them happily for years.

[Aliwally]

In my case this took three years Traci, but I totally agree with you. How can we ever find out more about FH if we don't actually know how many people have got it?

[vanGaal]

I do attend the local Lipid Clinic regularly & the defective gene has been identified. Thankfully it has not been passed on to my two oldest kids (my youngest is just over a year old and hasn't been checked yet). The consultant reckons I have tried every med available. The last thing I was taken was Simvastatin plus ezetimibe but the usual symptoms meant that for the past 6 months I have taken nothing and although I do feel much brighter I am more worried about the implications. Diet doesn't seem to effect my 'levels' very much at all so it really is a dilemma. If I stay off all meds then at least I can exercise without the fatigue issues but is this going to be enough? When my consultant started quoting percentages it really shook me up but from a 'quality of life' perspective it is a really tough call!!

[DakCB-UK in reply to vanGaal]

I'm sorry to say this, but it comes from experience: sod what the consultant reckons, have you really been through ezetimibe, each statin and the other treatments? Some consultants are brilliant, but none of them have as much time to study your treatment history as you do.

I'd strongly suggest anyone with FH keeps their own notes on treatment, test levels and other observations and keeps up-to-date with the help of associations like HEART-UK. One of my relatives did spot his doctor trying to prescribe a potentially lethal combination without the required testing, but that seems happily rare. If nothing else, it'll help immensely if you move area and your notes take a while to catch you up. Start your notes off by asking to see your consultant's notes during a visit.

It is a dilemma: I doubt exercise alone would be enough (I'm making as much difference as I can through exercise but it's not enough... I'm currently testing the effect of the UCLP diet on me), but it's all probabilities and even if you take the expected values, would you prefer fewer years before coronary events, or more years but with some side-effects? I've picked "more years with a chance of side-effects" but it sounds like I've got an easier choice.

Best wishes with your tough call.

[vanGaal]

Hadn't heard of this before and it certainly hasn't been mentioned by my consultant. I have left things with my consultant now that I will stay off all drugs for a period of 6-9 months and see how I feel. I am looking at dietary options to see if anything helps but I don't really feel that my eating habits are bad, or will make any difference.

[Aliwally]

You've probably tried this as well but were you on a high dosage statin when you got all the side effects?

Lower doses are meant to cause less side effects, I have even heard of people taking medication every other day or even 2 or 3 times a week. Personally I get annoyed at this "drive" to get LDL lower and lower with higher and higher doses. Again purely a personal opinion and coming from one who has had side effects and probably doesn't have FH either.

[DakCB-UK]

You lost all credibility at the word "myth".

It's a hypothesis. All trustworthy people have always acknowledged it is a hypothesis. At this time, anyone who writes about either the cholesterol link or the cholesterol myth is someone to take with a large bucket of salt.

[vanGaal]

The last few comments demonstrate well the difficult situation I am facing. There seems to be an increasing number of people/reports that question the whole cholesterol theory. On one hand my consultant is telling me that I have to take statins or face a must greater chance of having a heart attack, even though I have suffered from awful side effects from the drugs since the age of 18. Now, on the other hand people are saying that the dangers from high cholesterol levels is all a myth and it doesn't have any connection with heart disease. The more I look at the subject, the more confused I am!!!

[DakCB-UK in reply to vanGaal]

Until we have proof, maybe by some leap forwards that allows us to follow the bodily functions involved far more closely than we currently can, it's always going to be effectively a best guess. It's probably good that you're looking and want to be involved in the guessing.

My advice is to look critically. Keep asking "what supports this claim?" and look at the evidence banks like the NHS one or the Cochrane Library. People don't matter as much as evidence (although people can sometimes corrupt the results). Anecdotes can hint at what to look at, but the full trials produce real data which are some sort of average.

The other complication is that as we learn more about the gene mutations resulting in FH, it looks to me from studies like nejm.org/doi/full/10.1056/N... that different mutations or combinations of them react differently to each treatment. This doesn't look like it's going to get simpler any time soon, I'm sorry to say!

[Aliwally]

Join the club! This statin/cholesterol debate has given me more headaches over the last three years than anything else.

My own conclusion is that you have to weigh up your own particular risk and just keep on getting as much information as possible. The difference between absolute and relative risk really annoys me as relative risk gives people misleading information. I would rather keep medication low at the "risk" of higher TC levels as I get side effects from medication. Somebody who doesn't wouldn't agree with me and that probably includes most doctors in lipid clinics.

[DakCB-UK]

My aggressive language is probably because I am a scientist and so I really hate attempts to misrepresent the data, or replace data with anecdotes (even from doctors) and unsubstantiated claims. Both irrational statin fanatics and irrational cholesterol deniers will draw my ire.

[DakCB-UK]

The other things is that some FH sufferers have a family history of premature CHD despite not having other risk factors. So wouldn't you suspect the hypercholesterolaemia as being a risk factor then?

[Hidden in reply to DakCB-UK]

As far as I know, the best predictor of your risk is your own family history. Have other people in your family had early heart disease?

If so, then yes there may be a genetic cause, but that doesn't mean it's the cholesterol that's causing the heart disease. The genetic cause could be something else. Correlation is not the same as causation.

FH is about 500 different mutations. Everyone who has it has a very different risk profile.

[patch14]

Hi VanGaal, I had a level of 7.0 three years ago, and 1 year ago was diagnosed with dairy intolerance. I HAD to change my diet and am on oat based milk products and avoid bread (slight yeast intolerance) It's been a challenge but the side effect has been a lowering of my level. My "good" choloresterol has gone up and the "bad" down, although the total figure is only slightly lower than it was 3 years ago!!! The diet route is not a bad one to try and worth it if you're off the medication for 6ths. Give it a try. Lots of oats, a natural chloresterol lowerer, veg and fruit and watch the red meat!! Good luck! Patch 14

[2squirrels]

To help statins work you also have to adjust your diet, they're not a magic potion. Most illnesses require a change in life style as well as diet and hard as it may be we must all get used to that.

[vanGaal]

To be honest, I think that my diet is pretty good, and has been since I was first diagnosed. You see my Mum was found to have raised cholesterol at the same time so we were all pretty much eating the same 'healthy' stuff. I agree that certain illnesses require lifestyle changes but what really confused me was a couple of years ago I made the most determined effort to stick to the medication I was on (Simvastatin plus ezetimibe) I had an awful 10 months of feeling really dreadful, severe muscle pains, mood swings etc etc and after all of that my cholesterol levels went UP!!!!! I have now been off the meds for about 6 months & feel really good. I am training again & getting fitter, have so much more energy & my mind does not feel 'cloudy' like it used to. It doesn't mean that I have forgotten all about my levels & I do intend going to get them checked in the next month or two to see what they are like! So, with regards to your comment 'they're not a magic potion', I certainly agree with you. BUT what happens if the side effects are more 'life limiting' than the 'potential' consequences of raised cholesterol?

[Hidden]

there are loads of alternatives for you - other drugs (ezetimbe) or LDL apheresis. I would suggest putting something in writing to your consultant saying you want to investigate alternative medications or methods of lowering cholesterol- e-mail would do, but keep a copy.

This should concentrate his/her mind because you have a written record that they've asked. To be blunt, your consultant doesn't sound very good - they should be suggesting these alternatives themselves.

You also need to be investigated to see what your state your arteries are in now.