As a patient who has experienced all of the items shown above, and who was unable to get any help from the medical profession, even having a most supportive doctor, I searched for answers, found nothing from any source within the UK, and by chance came across life saving information via the small, but active, Post Polio Network of West Australia which put me on the road to genuine scientific knowledge of the factors involved.
These do not lower cholesterol directly, but inhibit the production of HMG CoA reductase, from which cholesterol is made. However, another substance is dependant upon that supply, Co enzyme Q10, is made from the same raw material by a vulnerable 17 stage process, and is also reduced, plus others about which little is known, but having a very necessary purpose.
Statin side effects
No mention of Q10 lowering appears in any of the literature available to doctors or patients in the UK, this appears not to have been publicized by the drug companies, it has been known since the 1980s, when it was discovered by the late Prof. Karl Folkers working for Merck, they obtained two patents in 1990 for providing Q10 either in or with the Statin tablets to overcome myopathy, (Carnitine is not mentioned but its depletion by loss of Q10 is also involved). The patents appear not to have been acted upon.
Canada has introduced a requirement to include a warning in packs of statins that Q10 supplementation may be necessary. All this knowledge in the public domain should have been discovered when the license was being issued, and some mention of Q10 should have been published in the Formulary or other information on statins for doctors' use.
Almost every person I know has had various adverse effects when taking statins. I personally had great heart weakness, so that I felt I would only last a few more months, and considerable muscle wastage, neither went away after ceasing statins for 14 months, I know three friends with signs of heart weakness, and I know two other people suffering myopathy, one very severely. Problems may appear in any part of the body where Q10 deficiency occurs, and thus are spread over many categories in any statistical analysis.
Heart weakness in ageing is accompanied by low Q10 levels in heart tissue, and the converse, that low Q10 levels from statin use, cause left ventricular disfunction, has been demonstrated both in patients who have suffered it and in a small trial, small because it would never have got drug company funding, where the majority of over 50 year olds given a statin, developed worsening by one stage of measurement on the USA scale of heart weakness in 3 months, corrected by the administration of Q10. (See American Journal of Cardiology Nov 2004)
Against my better judgment I accepted a statin after a mild stroke, still taking Q10, but having had no angina for 2 ½ years previously, I had to give it up when angina returned, Q10 was being further sabotaged.
This substance and its deficiency seem to be little known, I have been asked if I meant carotene, the Formulary includes a very expensive form for use in new born babies who might otherwise be subject to Cot Death syndrome. An excellent treatise can be found by typing Carnitine deficiency+Fernando Scaglia into a search engine, this detailed paper is particularly about infants, although the general principles and medication are there. The only source of supply of carnitine powder, to be taken in water, is in the Health Food shops, which immediately gives the wrong impression, but it and Q10 both have a sound scientific base, the sports fraternity hope to get a lift from them. I need 2 grams daily, but commercial carnitine powder universally suffered from the removal of the final grinding process 7 years ago and I get a better quality form in which the final grinding process, in vacuum, is performed under the supervision of a pharmaceutical Professor in Australia. As it is in solution when taken, it is hard to see why this should matter, but it most certainly .does, one can only assume that as it is used at molecular level, the finer powder is closer to the desired size and less microscopically "lumpy" when in solution. I have to pay about £1.75 for each day's supply. The supermarkets know about Carnitine , a recent advert said : "Our 3 oz steaks contain 80 mg of carnitine", it is mainly in lamb and beef, and in avocado, but over a kilo of meat, or 20 avocados would be needed per day.
The deficiency of Q10 due to statin use should be given much greater publicity so that all patients affected could have access to supplementation. Surely the regulatory authorities should have known about it as the effect has been known for over 15 years. Real independent scientific research should be initiated to prevent possible irreversible long term side effects becoming widespread. It would have taken about 7 years before I became an event to be included in statistical evidence, and I know another case with a similar timescale. The studies based on data from previous trials would not have been looking for the possible effects, heart failure being probably ignored as a fact of increasing age, when the statin has brought it forward by several years. It is of no great value to save that small percentage of people who would have had heart attacks, only to bring forward the risk of demise of the remaining great majority, not at risk from heart attack, from statin induced cardiomyopathy.
Statin use, in my opinion, should be accompanied by level measurements of both Q10 and carnitine, free and acyl, and the upper limit for CK needs to be made much lower.
Trial results of statin therapy give results which seem to have been ignored; the early trials said that total deaths were not affected; only heart attack cases, other deaths must have increased. The large Interheart study showed no correlation between total cholesterol and heart attacks, but only LDL/HDL ratio, reduction of total cholesterol still seems to be the goal. The PROSPER study of statins given to elderly folk showed a significant reduction in heart attacks, only to be replaced by an almost equal number of cancer deaths (possibly due to the loss of Q10's free radical quenching properties), and no effect at all on strokes.
Neither Q10 nor carnitine appears in the Formulary, they are both essential supplements, with virtually no adverse effects; I would not live long without them. Suppliers will be forced to jump through hoops to market them, due to the Food and Supplements Directive of the EC (and CODEX?), while the licensed drug causing the problem is freely available.
I looked on the internet and found several examples of the use of Q10 for diabetes, having a limited amount of success, and then it struck me that this is another case of age related deficiency of Q10, this time damaging the insulin production process in the pancreas. I also read that pancreas cells have died in diabetics, most probably because their energy requirements were not being met.
This would explain the partial success of Q10 supplementation, the remaining good, and damaged but not yet dead, cells are given a fresh source of energy-enabling material to improve insulin output to reach the maximum possible in their reduced state.
Q10 could not be a cure, but a means of preventing further decline. Prevention of diabetes is another matter, and can only happen by taking routine Q10 level measurements at, say, 50 years +, or by using the more simple and now routine pre-diabetes glucose tolerance test at regular intervals.
This raises the question of statins being given to diabetics to prevent heart problems, diabetics are more liable to suffer these, but is their problem due to coronary artery blockage, or is it Left Ventricular or similar failure? Death certificates are likely to show Cardio-vascular disease as cause of death, and statistics become misleading. Heart action is most probably already impaired by Q10 shortage, as well as pancreas function, so that statins will cause further Q10 lowering and just make things worse.
I feel quite strongly that Q10 deficiency should be given a much higher profile in studies and research in other specialisms, Professor John Cleland's department at Hull has already done some work on this subject, and has more under way, but appears to be just one of very few who are taking this important subject seriously. Lack of funding appears to play a large part in the selection of research projects, drug companies are unlikely to pay for work which cannot result in patentable drugs with high value sales expectations.
Ray G Holder