statins and doctors

[suki65]

Why can no-one tell doctors that statins hurt people so much and why do they not listen to us as we are proof that statins cause vitamin d deficiency ,cause b12 to become low ,cause arthritis ,cause muscle wasting ,cause mental illness and cause so much upset with the patient who has side effects

[MikePollard]

One reason is that doctors have a government incentive to reduce cholesterol levels in the general population ie they are paid a bonus if the numbers drop, and that involves prescribing statins.

Another reason is that most doctors are woefully ignorant about the role diet plays in heart disease and just accept the de facto guidelines. Nothing will change until people with access to the internet and an interest in the real reasons for obesity, heart disease, diabetes etc reaches a critical mass.

[Hidden in reply to MikePollard]

Spot on, Mike.....I guess those of us who know from experience have to spread the word....to everyone, other sufferers and doctors alike. I hope the system has changed now but when my other half (now passed) trained as a doctor he had one half day on nutrition.

[sandybrown]

Hi,

Let the doctors give you medication, at the end of the day it is up to the individual to take the medication or not to take the medication. When the GP tells you once the damage is done by high cholesterol and high blood glucose it is too late, there is a human reaction!!, go for medication.

Six months ago I was given station medication, yes the cholesterol value did go down. There are side effects, I have them. I do not take station every day now days, only once a week this may help on the long run.

I am careful on the food intake now days and also watching the weight!!.

I take butter, rock fort cheese, enjoy going out for dinner and eat what I like for one day. Only time will tell. Planning to do a full blood test before the end of the year. Have to watch blood glucose as well.

[Aliwally]

I agree with Bala, nobody is forcing us to take medication in the UK (unlike some horror stories I have read about in the US, mostly related to medical insurance). I do think side effects are under reported and the drug trials are often keen to weed out people who might be more likely to suffer side effects, eg older people, those with additional problems..in fact the sort of people who go and see their GP!

[ChasB]

Right on, Mike! Couldn't agree more.

Best wishes, Chas.

[spats]

the dreaded government targets that were introduced in the hope that doctors would take more care has descended into a money generating exercise. Care has gone out of the window!!

[suki65]

Thank you for everyones reply i was taking statins as the specialist who i saw said i would have to be on them for the rest of my life i am female age 46 when diagnosed with type 3 hyperlipidemia genetic i have never been poorly before went in 2011 as my cholesterol was 12.1 and triglycerides 5 , i dont smoke or drink alcohol i have a healthy diet and walk everywhere i weigh 8 stone i am 5feet 1 and i have had 5 children .

Since taking statins on and off for 2 years my cholesterol has gone down from 12.1 ,to 3.8,to 6.2 now my triglycerides from 5 to 1.8 and now 2.1

while taking statins i have been depressed ,sore bones ,left arm cannot move properly ,thighs changed shape ,ankles,knees,elbows and hips sore,very tired . my vitamin D was 17 but with vitamin D and calcium tablets they re now 32.3 ,my b12 was 276 but not sure what it is now but i have been told it is to high

i went to the doctors for help with my cholesterol but every week i now get other illnesses

when will all this stop and i feel good as i did for my 46 years of life

[mario55 in reply to suki65]

Instead of statins you should try 'plant sterols' I get mine from simply supplements.

3 years ago they told me i needed a triple heart bypass and my cholesterol was 8.4 so they gave me statins. I refused the operation and have never taken the statins instead I take plant sterols to lower my cholesterol , serrapeptase to clear my arteries and COQ10 I also play golf and watch my fat intake but eat mostly what I like don't smoke but have a beer red wine or whisky most days, my cholesterol level is between 3.6 and 5.2 and I feel great.

[sandybrown in reply to mario55]

Hello,

Very interesting. I do take beer red wine or whisky most days! ( some times pain in my left big toe!)

At them moment my cholesterol is under control by life style change. Very good that you have not had the heart procedure, no statin.

Are these ( plant sterols to lower my cholesterol ) very expensive? do you have a list of them?

Waiting for my latest blood test results!

Thanks.

[sandybrown]

Hello,

Looking at these points “while taking statins I have been depressed ,sore bones ,left arm cannot move properly ,thighs changed shape ,ankles, knees, elbows and hips sore, very tired”.

For nearly 30 months have tried to lower cholesterol and gave in to statin, yes, statin did bring down the cholesterol numbers. Site effects as above, am 67, male, (BMI= ??) and still in full time employment, working in front of a PC screen is very difficult because of side effect from statin.

Take statin only once a week. This is my plan to reduce cholesterol with life style change, thirty minutes in the gym at weekends and food intake. Sainsbury’s free cholesterol testing this week, cholesterol= 4.33, HDL=1.06 and blood glucose=6.6, who is promoting this free testing “flora pro>active". My question is the other cholesterol testing give device give more information, the one used at Sainsbury’s only give limited information!, anyone can calculate ratio with some understanding. Why are they not using an expensive machine that can give all the information?.

Do not agree with their ten tips for a cholesterol lowering diet.

Wish you all the best in keeping cholesterol numbers.

[suki65]

I hope you have managed now to keep your levels at a manageable level and wish you luck bala

do you know your b12 and vitamin D levels ?

and do you know if your cholesterol can become to low it confuses me as we are all not doctors but we are becoming very knowledgeable and understanding our bodies needs ,i hope one day the doctors will look into the side effects people suffer with statins and realise that people could get some kind of arthritis from the depletion of what statins cause in our bodies

[hairyfairy]

I took statins for about 3 months last year I found the side effects intolerable. I slept most of the time, & my muscles ached when I walked, so I stopped taking them, & soon felt better. My cholesterol was 6.5 at the last count, & my doctor is pressuring me to go back on statins. I`m trying to lower my cholesterol with diet & excercise, but with no luck so far. I can`t see the point in taking a drug that makes me feel unwell, even if it does lower cholesterol..I feel that doctors are being pressured by the drug companies to make them money with statins.

[whitelocke in reply to hairyfairy]

hairyfairy, I have had exactly the same experience as you. The constant fatigue was making me irritable. Now they have changed the system for making appointments I frankly can't be bothered to phone the surgery any more (I suspect that's exactly what they want!). I am on the go constantly and have just "retired" and want to make the most of my life. Without Statins I feel full of life. I hope you're similarly placed, good luck!

[suki65]

Thank you Traci my GP is good but no one will say tht the problems i have are the statins i tried to prove this but i cant stay on them or try them again to show what they do to me as i can not cope with them .

I just wish i had the money to go private as i would not have had to go through all this .

Traci i was put on fenofibrate also but got side effects from those also ,i just dont know what to do anymore as i feel a little let down by doctors

[sandybrown]

Hi Traci,

Am confused, had a look at the link given above. What is a point being made here? Thanks.

[hairyfairy]

I`m feeling more or less back to normal after I quit the statins, & this experience has put me off them for life.

[suki65 in reply to hairyfairy]

how long did it take for you to feel better from the statins ?

[stevemf]

maybe so however they do help to manage cholesterol levels couple with a healthy diet and exercise, some of the side effects can be mitigated against.. maybe a GP appointment with a referral to a dietician or a visit to a lipid clinic, might help check out Heart UK website for healthy meals.. I found all of the above very helpful .. the trick is to stick at it.

[suki65 in reply to stevemf]

diet does not work at all for me it does nothing i have been to a dietician and also i am registered at a lipid clinic but they dont seem to understand .these sites have helped me more than paid doctors

[suki65]

Traci what are the peripheral artery disease ? i have small lumps under my skin which move some are sore sometimes ,they can go smaller will they be lipids ? i have been told they are fatty lumps of like gristle .would they not go if triglyceride comes down

[suki65]

have you not had side effects from fibrates Traci i did what fibrates are you on please

[suki65]

thank you Traci for all this information i am from Oldham i went to oldham lipid clinic but i have been referred to huddersfield i have been once and they didnt have my records so i had to fill them in on what had been going on. My next appointment to see them is in october but i am so worked up about it all i just think i should just try my own and stop being a pain all round and get my body feeling as it did without the statins ,the B12 AND VITAMIN D with calcium seem to be making my left arm feel a little better .

[sandybrown in reply to suki65]

Hello,

Please write down all you questions to your GP and clinic before you go for your appointment and write down all your answers. List all previous test results and ask questions on the numbers. You nee to be satisfied with your medial test results and medication. I get confused from what I read on the Internet. Good luck.

[suki65]

I havent taken statins for about 3 -4 months now my left arm is very sore if i move it wrong or use both my arms together it never used to be like this before statins ,my thighs have also changed shape as if my muscle drops when i lift my legs

rosuvastatin,pravastatin and simvastatin i have tried and had side effects from all fenofibrate also side effects

i seem to be managing my levels through intermittent fasting but my side effects arent getting better

my b12 was done they said normal at 276 and my vitamin D 17 which they said needed to be above 25 my vitamin Dis now 32.3 with the treatment of vitamin d with calcium

[suki65]

i had the orange/yellow lumps visible on my elbows ,knees and thigh ,i have orange on my palms still but not as bad but the lumps under my skin you can feel if you touch but you cant see them ,they become sore to touch sometimes .

recently my arms both seem to have lost feeling

[sandrien]

Suki, please stop taking whatever statin you take now for some weeks/a month and first and foremost check this way whether your sideeffects will go away. One thing is then you know for sure that the statins are the reason. Secondly, quite some statin damage might be IRREVERSIBLE... and if you go on too long... some of the problems might not go away anymore, some might take years to get better,... unfortunately I'm speaking out of experience, in diverse fields strongly damaged. all the best! take good care of yourself!

[sandybrown]

All,

blue Crest screening package is good for most of our problems. Individual tests or a package, package is better value for money.

Because of the Blue Crest report, I had a lot of questions, confusing answers and learned a lot in the process. I am planning to see a NHS specialist through my GP practice, awaiting appointment.

[hairyfairy]

It took me 4-6 weeks before I stopped feeling sore, but the drowsiness went away as soon as I stopped the statins.

[Mikky]

Wow, not seen such a busy thread before!

In December last year, I spoke with my GP, with concerns about muscle pain and difficulty, which I didn't have prior to having an arrest in August last year and subsequently being put on Atorvastatin 80mg. He took me off them for 2 weeks, and as I felt no difference, he advised me to resume taking them.

after getting depressed about deteriorating mobility, I spoke to him again, he said he would prefer me to keep taking them, but if I wanted to experiment, then it was my choice.

So I made the decision to stop taking the statin, but for a longer period of time. After 4 weeks, I am now noticing a small improvement, and after reading about side effects both on Health Unlocked, and on some of the recommended websites, I believe that 2 weeks was definitely not long enough. I will review my condition at 8 weeks and 12 weeks, and if I am still improving, I will request a cholesterol check, and then make an (hopefully) informed decision from then.

Meanwhile I will carry on researching, and especially interested to hear what everyone else has to say about their experiences with statins, and their healthcare professionals!

Mick C

[sandybrown in reply to Mikky]

Hi,

What you your cholesterol numbers from it was first checked? At the moment Sainsbury's has free cholesterol check, may be worth checking for your medication holiday. Medication every day or every other day or every week have not been compared!, I was on 20mg station, stopped for a while now take it once a week. Next blood test is in December this year.

[Mikky]

Hi Bala

Thanks for your reply. I have not had my cholesterol levels checked since April 2012, and at that point, I was told that they were slightly high, and was put on Simvastatin, possibly 20mg as a precaution, and advised to keep an eye on my diet. I cannot recall the figures. I assume that they may have been checked after my 'cardiac event' in August 2012 while I was in the CCU, but was not made aware of the results, and probably wouldn’t have been interested at that time.

It was while I was in the CCU, that I was put on the Atorvastatin, along with a heap of hypertension drugs, which I was told, was the standard procedure for anyone who has had an arrest / attack, and did not question it until I started to encounter the muscle problems, which apart from the pain, and 'heavy arms and legs', I have also suffered torn muscles twice when just walking, which is only something I ever experienced when playing squash or other sports.

Which is why I have started taking thing into my own hands.

I like the idea of the checks at Sainsbury’s, but it seems my nearest Sainsbury pharmacy is just over 40 miles away.

[suki65 in reply to Mikky]

have you had your vitamin d ,b12,iron, folate checked

[suki65]

hi i will find out if my b12 is high tomorrow and they redid other bloods i will post what has happened tomorrow last week my cholesterol was 6.5 and triglycerides 2.2 i was told my b12 was too high so they redid all the tests i have to ring tomorrow afternoon to see what is going on .

my left arm is feeling a little better i am ale to move it a little better without being in agony ( this happened since taking statins as did other side effects )

[suki65]

got my result for b12 back it was 276 which they said was normal but i had them done again 2 week ago 722 they came back as my doc said that is too high and thought there was a blip so rechecked last week its 648 can you help do you know anything about b12 or does anyone ?

[sandybrown in reply to suki65]

Hi,

You may consider asking B12 in another question, it may get lost here!

We have to fist understand the units, given below is from the WEB.

A vitamin B12 test measures the amount of vitamin B12 in the blood.

The normal values listed here-called a reference range-are just a guide. These ranges vary from lab to lab, and your lab may have a different range for what’s normal. Your lab report should contain the range your lab uses. Also, your doctor will evaluate your results based on your health and other factors. This means that a value that falls outside the normal values listed here may still be normal for you or your lab.

Normal:

More than 200-835 picograms per milliliter (pg/mL)

148-616 picomoles per liter (pmol/L) (SI units)

Please ask for a print out of your test results, this is to make sure the units of measurement is correct!

Your reading of 276, 722, 648 looks normail in pg/mL. In pmol/L higher than upper limit.

Please Google for B12, you may find a lot of information.

[suki65 in reply to sandybrown]

bala do you know why my b12 in 2 months on b12s has gone from 276 to 648 and my serum folate from 12.3 ug/L to 6.4 ug/L should it not have gone higher ? or why has it nearly halved in 2 months will it go lower ?

my serum c reactive protein is 0.3 mg/L this was July 2 months later 0.4 mg/L

serum creative kinase 126 u/Land plasma glucose 5.4 mmol/L

i would be grateful if you could enlighten me on any of them im 48 ,female height 5 feet 1 just under 8 stone English

[sandybrown in reply to suki65]

Hi,

I am afraid I do not understand the units for these tests and how the results are worked. You may need to speak to a GP or someone who understand "B12" testing.

[suki65]

my doc is on holiday at the moment i am picking up all my results on monday so i can take them to the specialist on the 22nd october ,i will let you know what i find out with them Traci maybe you will give me advice as i seem to find out more from you than anyone .

thank you for asking i think that what i am doing myself is helping me my left arm feels like it is getting better sometimes but would really like to know if the exercising is helping .

did you have your b12 checked when you found out you had type 3 hyperlipidemia i have heard if that had been checked right at the start things would have been clearer and treatment would probaly have been different i hope you are well

[suki65]

finally Traci i got my print outs please could you see what you think 26th July B12 276 ng/L ,

serum folate 12.3 ug/L told normal no action

serum c reactive protein 0.3 mg/L

serum creative kinase 126 u/L

plasma glucose 5.4mmol/L

5TH september cholesterol 6.5 mmol/L high but diet carry on

triglycerides 2.2 mmol/L high but diet carry on

HDL cholesterol 1.3 mmol/L

LDL cholesterol 4.2 mmol/L high

cholesterol/HDL ratio 5.0

had others done 17th september

B12 643 ng/L high

serum folate 6.4 ug/L

cholesterol 6.4 mmol/L

triglycerides 3.3 mmol/L

HDL 1.3 mmol/L

LDL 3.6 mmol/L

cholesterol /HDL 4.9

serum C reactive protein 0.4mg/L

I also had these below

Erythrocyte 8mm/h

HB 136g/L

WBCs 4.8 10*9/L

Platelet count 180 10*9/L

RBCs 4.62 10*12/L

Haematocrit 0.393

MCV 85 fl

MCH 29.5 g/L

Do these help at all there are more but im probably boring you thanks if you have any advice