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High cholesterol, very bad reaction to statins, advice?

Posted , 4 users are following.

SusieC
SusieC

I'm female and 64 years old. The last time I had a test for high cholesterol the total was 10.8. At that time I was overweight, a heavy smoker, had a high-fat diet and little exercise. I was prescribed simvastatin but in the night after taking the 2nd pill I woke up with breathing difficulties. My doctor changed to Lipitor, saying that had few side-effects. Within 30 minutes of taking the 1st tablet my face was numb and tingling, I had joint pains, just about every possible side-effect, all severe. So I was prescribed a new non-statin drug (forgot the name) but stopped taking it after reading research showing it caused narrowing of arteries. I was then given high-dose Niacin, in 3 months my total cholesterol had dropped by 0.2, triglycerides had dropped from 2.5 to 1 but HDL cholesterol had also dropped and LDL increased. At that time I'd just started a diet and exercise. I stopped the Niacin after reading that heart attacks were more likely to be fatal in 25% of patients taking niacin.

Since then I've lost almost 3 stone, exercise regularly, have a low-fat diet and have cut my smoking from 50 a day to 5 to a maximum of 10 a day, using ecigs. I have no idea what my cholesterol is now as my Dr says there's no point testing if I'm not taking drugs. When I was younger and total cholesterol was 6 he said there was no need to do anything. My GP is due to retire soon and his replacement would try every available statin in the hope that he finds one I don't react to. I hope my levels have improved due to lifestyle changes plus eating a lot of porridge oats and having Benecol daily.

Because my total cholesterol was so high 3 years ago, should I try to find a statin I can take? I have normal blood pressure but it is very difficult to find a vein that will let anybody draw blood, the reason, I think, why my GP has done no more tests. He has to draw blood from my foot, no other Dr is likely to, and phlebotomists just can't find decent veins.

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  • marco
    marco SusieC

    Posted

    Hi SusieC, I think you should find another (younger) GP if he he won't test for cholesterol. I would have thought that there every reason to test if he doesn't know what your cholesterol is now. Looks as though he can't wait for retirement.
    • SusieC
      SusieC marco

      Posted

      Hi Marco. It isn't the age of my doctor that makes him reluctant to do blood tests, as with many GPs these days, he's taken partial early retirement. He sees no point in checking my cholesterol level if I'm taking no medication. If I was taking statins he'd arrange a double appointment with me and the phlebotimist who would watch while he took the blood. He is very good at finding veins because he worked in a hospital paediatric department. But a blood test for cholesterol would just give a comparison between now and a few years ago. I can't take statins and there are no safe drugs that work reasonably well available now.

      I also know the reason for linking low cholerterol with low heart attack rates. A village with far lower rates of cardiovascular disease that also had a population with low cholesterol. Another remote population was found later with the same cardiovascular disease profile only they were found to have high cholerterol.

      I am one of those who can't tolerate statins. I also have very small, deep veins and I have spent too long being shuffled between GP and hospital phlebotomists and back because they have limited time, are only allowed three attempts and not permitted to try to take blood from unusual places. True, the hospital does have equipment to find viable veins but they don't use it for routine blood tests.

      A younger doctor who doesn't know me might try to put me through the hell of statins and I might be tempted to try yet another, but each type causes a more violent reaction than the one before. Also I have seen no research that proves that statins really do help. I know that far more people survive than in the past but they still have cardiovascular events, but treatment is much better now.

       

  • marco
    marco SusieC

    Posted

    I like you have bad reaction to every different statin I've taken and have been off Atorvastatin for about 3 months following serious thigh muscle pain. The pain stopped as soon as I gave up statin. Had I seen the practice head instead of a more junior doctor he probably would have changed my statin which he's done over a ten year period. I find that all statins reduce my HDL below the safe limit when my LDL level is ok. I will have a cholesterol test this week.

    It is not acceptable for your doctor to deny you a blood test when he doesn't know what your cholesterol level is?  If he can't take blood he should refer you to someone that can.

    • SusieC
      SusieC marco

      Posted

      I only took statins for 3 days. In the second night of taking simvastatin I woke up having great dificulty breathing, but recovered from that very quickly when I stopped taking it. I only took one atoravastatin pill two years ago and the effects were a nightmare. I still get muscle pains caused by that one tablet and at the time that was the least of the bad effects.

      If I insisted on a ckolesterol test my doctor would give me one but I agree that there is little point in measuring my cholesterol. The last test was after several months taking a non-statin cholesterol drug and I did have a 0.2 reduction due to total triglycerides being halved, but I had lost a few poinds and started going to the gym then. Apart from that my good cholesterol was slightly lower and bad slightly higher than when taking nothing and having an unhealthy lifestyle.

      What would be the point of having a fasting blood test? I will never risk taking statins again, alternatives are not particularly effective and studies show that they can cayse fatal heart attacks and strokes. I am also taking a drug that increases cholesterol and it may be that there is an interaction. I'd happily stop taking that, can for a day or two especially if I go to the gym daily, but without it I am in so much pain when trying to walk that I am housebound.

      At some point I may ask for a blood test because of that as it is a relative of vioxx, which was banned after causing many deaths from heart failure. But what would be the point of a cholesterol test?

      True, it would show what, if ant, difference my lifestyle changes have made and maybe also show a reduction caused by me taking the lowest dose entorocoxib tablet, but if the test isn't used to check the effect of anti-cholesterol drugs, what is the point in having one? 

      I'll add to this that I've yet to be told what cholestrerol is, why it is so bad when the body makes it in everybody (no family history) or why I should work my way through every statin before all GPs believe that I can't take them without very nasty and possibly dangerous side-effects.

      In my teens I learnt that there are a number if drugs that I can't take for various reasons. Some types I have no problems with, some cease to work within a week, some I am allergic to and some I am hypercensitive to. One of my worst experiences was when I was diven a long-lasting anti-histamine injection to counteract the allergy to one drug but I was hypersensitive to it and spent three weeks in agony with every muscle cramping at once a number of times every day. I was never given either drug again but I just had to live through the cramp. The doctor had never heard of such a violent reaction to what was just an anti-hystamine but there was no antidote.

      But what is the point of testing my cholesterol when I can't be given drugs to change it?

       

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