Need Advice on Statins ...Help

A message board to discuss personal experiences of Vytorin and its side effects.

Need Advice on Statins ...Help

Postby astarda » Sun Mar 08, 2009 5:55 pm

Hi, 6 wks ago my dr. put me on Simvastatin for my cholestrol . it is over 400. I have tried several different kinds statins since this time and have had same reactions to them..muslcle cramps ..flui.like systoms, pain in my uper arms ...ect.
after reading this forum I am wondering how safe they really are ..I have a pacemaker and am concerned that the muscle cramps will affect my chest muscles if i continue on the statin.
Please ..I need your input a from reading so much about the bad side affect i am very concerned .I do know a few people who take them and said they work fine for them even after 2 years taking them
I also have read that the drs. have been pushing statins a lot .
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Postby Allen1 » Mon Mar 09, 2009 2:20 pm

Hi there astarda,

seeing that you already have had reactions to the statins that you have tried, taking any other statin drug will probably prove to be just as harmful even if the problems are not immediate. I would guess that you are like the rest of us where statins are truly harmful, the people who you mention may be the lucky ones that are not prone to the side effects or they could just be the ones where nothing seems to happen until after some time then BANG!

I had/have heart problems and amongst all the other problems that statins caused was arrhythmia and it was very strong especially at night in bed. Take a good look around the site to see similar queries and as you already have a pacemaker, I would doubt if you would like the arrhythmia problems on top of the other side effects. Have a look for some threads on Q10 and magnesium etc for a little protection ok.

All the best,
Allen.
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Postby astarda » Mon Mar 09, 2009 2:55 pm

Hi Allen,
Thank you so much for your reply.
I am so happy to have found this site. I have tried 2 different kinds of statin and had same results..lot of what is mentioned on this site .I Quit taking Them .I think I would rather take my chances with a diet than go through that much muscle pain. no to mention the long range affects ..MY own drs nurse told me she could not take them . it took about 10 days for the first symptoms to show up and that is when i decided to go to the web and see what i could find out about them .and the ads for statin on tv are everywhere now.
I believe that the statins were affecting my muscles around my pacemaker as they were beginning to get very tight,ached and i noticed i was having to take deep breaths a lot .
since my colestrol count is over 400 i have been scared out of my wits. I was beginning to think it was just me until I came across this forum .I will check into the sites you added.
Thank you so much .
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Postby Biologist » Mon Mar 09, 2009 5:29 pm

astarda,

High carb diets (which is what you are on if you are taking pharma's advice to be on a low fat diet) raise insulin levels. Insulin instructs the liver to make a lot of cholesterol which is needed to deal with the inflamation caused by the high carbs; the high cholesterol helps to fix the inflamation.

Consider buying this book or finding it in your local library:

*http://www.amazon.com/Good-Calories-Bad-Controversial-Science/dp/1400033462/ref=pd_bbs_sr_1/190-4021149-7995912?ie=UTF8&s=books&qid=1236637250&sr=8-1

If there are parts of it you do not understand, post your question(s).

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Postby astarda » Mon Mar 09, 2009 6:54 pm

Hello Biologist,
I am not to sure what you mean about the high carbs.
I never have eaten very much . until i got my pacemaker i weighted around 125 pds.most of my adult life .I never have eaten very much meat of any kind ,no milk ,hardly any sweets . My high cholesterol is inherited in my genes as other members of my family also have high cholesterol. the leads in my pacemaker cracked about 3 months after getting it from a fall i took and i was back in the hospital 8 months later to have them repaired because i was getting shocked from the leads to my Heart Muscles . all this made me very inactive ,and thus i begun to gain
weight ..now at 152 pds. until now i have never had to watch every thing i eat or worried about my cholesterol.
I have started eating lots of Oatmeal,and about to starve myself if i have to ..watching and reading every thing i eat now for content .
I hate to take meds of any kind unless it is a have to case and i def. will not take any more of the statins.
Would you mind a bit more info on the hight carbs ,and i will check into getting the book you suggested .
Thanks So Much .I Appericiate any and all suggestions .
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Postby Biologist » Tue Mar 10, 2009 1:20 pm

Hi, astarda,

It sounds like you have familial hypercholesterolemia. Neither of these web pages will be easy to understand but you may want to take a look anyway:

*http://en.wikipedia.org/wiki/Polygenic_hypercholesterolemia

*http://en.wikipedia.org/wiki/Familial_hypercholesterolemia

There are others on this forum who know more about FH than I do. Some have it, such as Brian C. He may be of some assistance. I do not know enough to comment on it much. However, from the second hyperlink, note this statement:

"Cholesterol levels can be drastically higher in FH patients who are also obese."

Getting your weight down through diet sounds like a good idea. Cutting back on startches (e.g., potatoes, rice, etc.) and sugars is something I would do. These are carbohydrates (carbs). Has your doctor given you a diet to follow?

Note this statement from that same hyperlink:

"Prior to the introduction of the statins, clofibrate (an older fibrate that often caused gallstones), probucol (especially in large xanthomas) and thyroxine were used to reduce LDL cholesterol levels."

Thyroxine is thyroid hormone. You probably should make sure your thyroid function is good.

And this one from the first hyperlink:

"Elevated cholesterol in the blood is due to abnormalities in the levels of lipoproteins, the particles that carry cholesterol in the bloodstream. This may be related to diet, genetic factors (such as LDL receptor mutations in familial hypercholesterolemia) and the presence of other diseases such as diabetes and an underactive thyroid."

Note that an underactive thyroid is mentioned again. Getting thyroid hormone levels right can greatly lower cholesterol in most people.

Note this statement:

"There are no interventional studies that directly show mortality benefit of cholesterol lowering in FH patients. Rather, evidence of benefit is derived from a number of trials conducted in people who have polygenic hypercholesterolemia (in which heredity plays a smaller role). Still, an observational study of a large British registry showed that mortality in FH patients had started to improve in the early 1990s, when statins were introduced."

I don't like the the idea of statins people with FH since the statins prevent cells from making their own cholesterol (where they do not need to get so much from the blood stream). Blood levels come from cholesterol made in the We need adequate cholesterol in the cells for proper function.

But again, FH is not an area that I know much about. What I would say is to continue to learn. Keep your blood pressure at normal levels and don't smoke. One of the reasons not to smoke (maybe the main one) is that it raises blood pressure, but also greatly lowers Vitamin C levels. I assume you do not smoke. If you do, get your nicotine somewhere other than cigarettes if you are unable to quit. If I were you I would be taking four or five grams of Vitamin C every day regardless, and also plenty of Vitamin D and fish oil.

Good luck to you. I know that many people with FH do fine.

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Postby Biologist » Tue Mar 10, 2009 1:26 pm

Here is a better version of one of my sentences above:

"I don't like the the idea of statins FOR people with FH since the statins prevent cells from making their own cholesterol (where they do not need to get so much OF IT from the blood stream). Blood levels come from cholesterol made in the LIVER. We need adequate cholesterol in the cells for proper function."

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Postby Brian C. » Tue Mar 10, 2009 1:59 pm

I was diagnosed with heterozygotic FH many years ago. My TC was in the low teens and I had xanthomas on the tendons of my hands and achilles heels. I had developed heart disease as a result of a number of years of stress and broken sleep due in the main to our first born coming into the World with biliary atresia and resulting cirrhosis of the liver.

Then followed 20 years of cholesterol lowering strategies which became 17 years of statinization culminating in 80mg of Lipitor over the final years of medication.

I am approaching the 2nd anniversary of my rebellion. The last time I had a fasting lipid blood test I was 3 standard deviations above the population mean, i.e. around 300. I am quite happy to remain at that level and have no xanthomas. In fact I now appreciate my good fortune in having above average cholesterol levels since this brings advantages in terms of health and longevity - better resistance to infections and lower risk of developing cancer.

Low cholesterol is a pathological state with serious long-term health consequences.

My only concession is that I take 500mg of SloNiacin (TM) each day in addition to the usual raft of supplements that we statin-damaged need.

Xanthomas are unsightly but I don't believe they are life threatening :wink:

I believe the monozygonomous form of FH is more problematic since the liver will have no receptors at all. Fortunately it is much rarer than the heterozygonomous form, which is the commonest hereditary disease (affecting 1 person in 500) according to the literature.


Brian.
Last edited by Brian C. on Tue Mar 10, 2009 2:13 pm, edited 1 time in total.
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Postby Biologist » Tue Mar 10, 2009 2:06 pm

"I was diagnosed with FH many years ago.
My TC was in the low teens..." --Brian

Brian, I do not understand. What is the explaination for your Total Cholesterol to have been in the low teens?

Thanks.

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Postby cjbrooksjc » Tue Mar 10, 2009 2:23 pm

Biologist: I think what Brian is saying is his TC was say 13 mmol/l which is 13 millimoles per liter (a mole is 6*10^23 molecules) recommendation is 5 mmol/l or below, so a 13 reading would get a doctor's attention. I think the US is the only civilized country that uses our Mg/l form of cholesterol measurement.
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Postby Brian C. » Tue Mar 10, 2009 2:30 pm

Sorry, we have a different measure here in the UK. It's measured in millimols per litre (mmol/L). In the 'States it is expressed in mg per decilitre (mg/dL).

The first time mine was measured it came up as 13mmol/L, which translates as 500 mg/dL. Panic and years of anxiety followed. Doctors put the fear of death in me, which was easy since my dad died of a coronary just short of his 50th birthday.

If only I knew what I know now.... :roll:

:)

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Postby astarda » Tue Mar 10, 2009 3:13 pm

I Had Surgery to remove my thyroid glands in my neck about 12 years ago . since then i have been on Levoxyl . I have a thyroid panel done every 6 months or so to have the count checked but it is never right . so my dose is forever changing to try to get it correct .
so you are saying this may be the reason for my high cholesterol now.
Since all i eat are veggies{beans,corn,cereal,leafy green foods,ect. they all contain starch .
my dr. never said anything about this could be a problem..thyroid & cholestrol ..no suggestions of diet ..just Statin drug.
without veggies and cereal I do not know what else i can eat .
everything seems to contain some starch in it ..
and all the oatmeal,lower cholesterol cereals i have been eating just may be making my situation worse .
I was blown away when my dr. told me that my cholesterol was 400 because of the fact that I eat very little as it is now ....i am lat a loss as to what i should or should not eat .
I to have been scared as everyone keeps telling me i am a Stroke looking for a place to happen .
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Postby Biologist » Tue Mar 10, 2009 7:43 pm

You said you have a family history of high cholesterol; do you have a family history of cardiovascular disease, or just high cholesterol? Do you have a family history of members having their thyroid glands removed?

Here is a hyperlink that you might want to read:

*http://en.wikipedia.org/wiki/Levoxyl

Here is a thread that you might want to read. It is long, but there is some good info there particularly about using natural thyroid gland extract (i.e., Armour Thyroid) rather than what you are taking. (You are not getting any direct T3, for one.) BTW, for others, my morning temperature is now a consistent 97.4 degrees. I may update that thread in coming weeks or months.

I almost hate to mention this, but I it is possible that your need for a pacemaker was due to unresolved thyroid issues, as is hinted at in that hyperlink. That depends on the biological reason for the pacemaker. Not likely, but not out of the question. I suggest you read the first book that I mention in the hypothyroid thread I sent you too. Then give it to your doctor.

Something that is rarely mention but is real important is how jackass stupid it is to NOT watch cholesterol levels in food WHILE ON a statin drug. I was placed on 40 mg of Zocor rather than what I was originally on (20 mg.) because my cholesterol levels were not improving much. NO JOKE!! I was still eating eggs like they were going out of style. I did not know any better. (If my doctor did, he did not say anything about it.) The high dose of Zocor was necessary to counteract how much cholesterol I was eating/replacing -- and therefore my CoQ10 levels were getting slaughtered for nothing! Not to mention the fact that my cholesterol levels were just fine from the very beginning. This is a major mistake doctors are making. Before bumping up statins, they need to make sure a patient is lowering consumption of cholesterol or their levels will not budge. They make this mistake because they are never reminded by the drug reps who would rather see a higher consumption of statin medications since that is the basis of their pay. Again, this is simply HUGE but is never mentioned that I can see. The other major error, in my opinion, is the thyroid issue. Here again, it is downplayed (i.e., it is NEVER mention by the drug rep) because they don't want to hear anything about thyroids where they make no money -- they use thyroid problems as a means to make more money by selling statins. It is curious that temperatures are no longer automatically taken on visiting the doctor, in my experience. This is one of the "vital signs" and is dirt simple to take. It has crossed my mind that one of the reasons it is not done anymore is that it would interfere with Pharma profits. Don't take the temperature, no worry of discovering thyroid issues which would interfere with a prescription for statins. I would be interested in knowing what the story is on body temperature taking in doctor's offices these days. I don't remember the last time I saw a thermometer there! It was routine when I was young.

Why do you not eat much meat? The best proteins come from meat. We evolved to eat meat as our primary source of food. There is no doubt about this fact based on evolutionary evidence. How about eggs? You probably also could use a higher fat content in your food. No, this will not make you fat. Counterintuitive, but true.

If I were you I would want to lower my cholesterol a bit, but naturally. You are off the statins so eat eggs and get some good protein. This will not raise your cholesterol levels due to a body feedback mechanism that will not allow you to absorb more than you need. Take Vitamin C as I suggested as it will also lower your natural levels (regardless of eating eggs) and take at least 500 mg of carnitine per day as this too will lower your cholesterol levels. (I do not know how much.) Also, take fish oil. Krill oil is best. This is the exact stuff I take and this is where I buy it:

*http://www.iherb.com/ProductDetails.aspx?pid=14424&at=0

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Postby Biologist » Tue Mar 10, 2009 7:46 pm

Here is the thread I mentioned but forgot to put up the link:

http://spacedoc.net/board/viewtopic.php?t=1347

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Postby Biologist » Tue Mar 10, 2009 7:48 pm

Thanks Brian and Brooks. Yep, good explanations. I had momentarily forgotten about the unit of measurement differences used around the world. My mistake.

BTW, that is a significant difference in measurement -- not just a decimal point adjustment. To make the conversion, you need to know the molecular weight of cholesterol for going from a "number of molecules" per volume to a "weight of molecules" per volume !!

Bummer.

In Jon Stewart's "Daily Show" words (think: Captain Kirk cursing Khan): "%#@ You, Avogadro !!"

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Postby astarda » Tue Mar 10, 2009 9:14 pm

wow, a lot of info here.more than any dr. has told me . I have 1 sister who also has a pacemaker ( heat rate of 33 beats per minute ).. my heart rate went down to 32 beats a minute after i went in to have my gallbladder removed . I had to be revived twice as they could not get me to wake up from sleeping meds they gave to me . .that is when they told me i needed a pacemaker and am now pacer dependent .this was almost 2 years ago . I had leads revised this past june 2008 when they were cracked from the fall i took even though it took them 8 months to finally believe i was getting shocked and my left arm went crazy.
my father died when he was 41 from blood clot years back and i guess that is 1 reason i am so concerned about my cholesterol..I also have 2 other sisters who are both on statins..my older sister over the past year is a mess which i believe is all coming from the statin. she has massive amount of memory loss,slurring speech ,worrys about dying all the time ..mood swings ..nothing like she use to be but my younger sister appears to be ok so far .
My Daughter at the age of 13 had her thyroid removed at age 13 for a goiter ..but the goiter came back and at 21 she had surgery again and they took out her thyroid in her neck also .

I have never cared for the taste of meats and have never eat fish of any kind .even though i have heard it is good for a body to eat fish .
I have always heard Red Meats (steak,Hamburger ect..causes build up of plaque in the arteries so i just have not eaten any . my daily meals consist of
morning ..oatmeal or cereal & coffee ..i skip dinner most the time ..mabey a small salad or cup of soup ..and supper is all about vegigies & grapejuice..i never eat sweets ..but confess to drinking Sprite during the day .but even though i have all but quit eating i cannot seem to loose what pds i have put on since i got my pacemaker .
I believe i read somewhere that the levoxyl i take for my thyroid is made from animal some way ,but my dr. told me either take it and live or not take it and die ...
so i can eat a reasonable amount of food and not raise my cholestrol more as long as i watch what i eat .I am trying so hard to get it down ,would like to stay around a while longer ..you know .this constant worry about trying to get my cholesterol down is making me a nervous wreck .I am going to thread you sent and read up on that .
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