Cholesterol Level :: Familial Hypercholesterolaemia And Statins
Oct 11, 2014
I have been diagnosed with Familial Hypercholesterolaemia at the age of 5, after around 30 years of battling with doctors over my diet. Up until now, my combined cholesterol has never gone below 7.0 (without statins which I took for a few months around 5 years ago - it went down to around 4.0), and doctors continually insisted that my diet was at fault.
After another round of insisting that I take statins, I refused and was sent to the lipid clinic, where they looked at my history and proudly announced that my diet was not at fault and it was hereditary.
They then insisted I go on statins, as in their words, I have nearly 50 years worth of <fat> lining my blood vessels.
They did no cardiac tests or ultrasounds or stethoscope on my neck, etc., to find out if I was "furred up", and they then referred me back to the GP.
The GP didn't get in touch with me, so I made an appointment to see him, where he put me on a low dose of steroid.
I asked him about whether I should find out if I WAS at risk of heart disease before he shoved me on them, as in my mind, if my cholesterol had been so high ALL my life, then why did I not have any of the associated symptoms of FH, such as early heart disease, fat deposits on eyes etc?
Also I have reduced thyroid function (not reduced enough to be treated under the current guidelines however).
So, a couple of weeks later, at a pre-op for an upcoming gynae procedure I am to have, I mentioned about not having my heart looked at in years, and the kind nurse did an ECG and listened to my heart with a stethoscope. I was told my heart was ok.
What I would like to know is, would that "OK" on my heart health be a good reason not to take statins, or would further tests need to be done to ascertain whether I am at increased risk of heart disease - other than my cholesterol level.
I have read recently that if your heart and vascular health is OK, it doesn't matter what your cholesterol level is, it will still lower your risk - is that correct?
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My husband has this condition and has been on statins for some years now. His levels are now good, he hardly drinks but his diet is awful - and always has been. Basically red meat, pastry, cakes and spuds, preferably with fat of some kind. My diet is good and all the right foods are in the house and available. This year he has been feeling unwell - aching all over and very tired. His weight is good despite the diet though. He has lived 7 years longer than his father, and I would like to keep him for many more. I am wondering if the statins may be causing the problems and whether the condition can be managed by diet and if so how the heck do I convince him to change? He is due to see his doctor next week.
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I had a blood test around 7 months ago which showed my blood sugar Hb1AC to be close to pre-diabetic levels, which freaked me out. My cholesterol was also a little high.
I cut down on sweet things (which I love!) a lot, and had my blood tested again a few weeks ago. good news is that the blood sugar levels have dropped, triglycerides low, liver function great. HOWEVER, my cholesterol has leapt to 6.6! So annoyed!
The nurse quizzed me on my diet and the only thing we can pinpoint is that I eat a lot of cheese, so have started eating low fat cheese or not eating as much in general. I generally eat what I consider to be a healthy diet, oily fish, veg, etc but not sure what to believe.
I read that a high fat diet is now the way to go with low carb, but whilst this seems to have helped with blood sugar, it has not done my cholesterol any good.
I have to go back in 3 months. Anyone else had this type of result?
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I am interested in finding other people who have inherited high cholesterol. I was diagnosed when my late mum had several strokes and me & my 5 older
sisters were screened.
It was just my eldest sister & me (the youngest) who had inherited it. 2 of my sisters 3 daughters had it, and both my daughters. Does anyone else have such a strong family history of inherited cholesterol?
I live in UK & am currently on Ruvastatin 10mg.
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I've just been diagnosed with hardening arteries in my legs, the GP said I must take statins but I also suffer from fibromyalgia and chronic back pain so don't want to. Cholesterol is 6.4 with high LDL. Can I reduce this with diet?
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I have entrenched myself in a low-fat Mediterranean diet and now have much better lipo-gram figures. I now wish to wean off my statin tablets. Is this easy to do?
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Saw doc yesterday my cholesterol is 248 I can't take statins he's given me niacin. I'm starting fish oil 100mg a day any other natural advice
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I have recently had my cholesterol level tested and it came back as 5.3.
I had an appointment at my doctor's surgery with the health care assistant. She said I need to reduce the saturated fat in my diet for 6 months then get my cholesterol level tested again to see if it's high because of my diet or a health issue.
My retest is due for the end of March 2013 which means Christmas is in the middle of the period. Will a little 'binge' or Christmas pudding etc undo the improved diet for the 3 months previously?
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I recently had a check up at the doctors who has put me on blood pressure tablets which has now brought my blood pressure down to 124/76 from 158/110 in 3 weeks but she has also said my cholesterol level of 6.9 is too high and my blood test showed i may have kidney problems. She has advised another blood test in 3 months and said not to eat red meat for 3 days before and drink lots of water and my kidney test may come back fine.
I have never suffered with blood pressure or cholesterol before, I am 47 and generally in good health but am going through my change, could this be the cause? and I should I be worried by results, I do not want to have to take tablets forever.
I have cut out salt and brought all low fat alternatives and started to do 30 mins exercise 4 times a week.
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The doc put me on niacin to lower my cholesterol I haven't taken it yet scared it may mess with me but my question is will high cholesterol cause vision issues and other side effects
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I had a general health check at doctors yesterday. Am a 41 year old male and am taking co-codamol painkillers and amitriptyline on regular basis for back/nerve pain. Try to be physically active when I can but have real issues with my back and legs that limits anything too physical or for any length of time, but in general I manage at least 30 mins of some kind of physical activity each day. My diet isn't brilliant but it isn't terrible either (can be improved I'm sure).
6ft tall, waist measured yesterday at 38" and I'm just under 80 kg in weight.
My health check said my blood pressure was good, and that my pulse was nice and steady but also that my good cholesterol was above average (over 1.5) but that my bad cholesterol was not where it needs to be at 7.2.
The bad reading has freaked me out a bit. I've never had a cholesterol test before so cannot compare reading to a historic level but nurse has requested me to have a further blood test and probably a chat with doctor.
So, question is does having an above average level of good cholesterol and good blood pressure help manage the higher levels of bad cholesterol? My overall risk of having some kind of cardiac issue in next ten years came out at 1.49% which seems fairly low, but I forgot to ask how low you can get this % ie a risk of 0.01%?
I can try to up my physical activity a little bit but how dramatic would you change your diet based on above? I have lost two relatives to heart disease on my father's side of family (his sister and his father) but both parents appear to be fine although not aware they have ever had their own cholesterol tested.
I'm going to try and lose a few kg in weight which I'm sure will help but any advice in how to better manage my bad cholesterol appreciated.
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i have been suffering from this debilitating Chronic disease all my life, I was diagnosed back in 2006 by a gene test. Ever since I was put on a disability pension. I suffer from recurrent episodes of high fever and pain in all my joints, my life is made of pain, and with at least twice a month sometimes even more often I get high flares.
nothing I was given by my GP that really helped. I may have few hours of the day at times that I feel normal, this is when I take advantage of the time to do housework chores. My husband who was my carer was there for me, helping me on my daily progress, since he passed away (15 month ago) on a stroke I have been suffering even more, emotionally and physically.
Since September last year, I have been chased by Centrelink, who's telling me that back at the time they accepted my application for the disability I didn't have enough evidence to become eligible for that and had had made a mistake, so they asked me to bring evidence from specialist to do so, it was the time just before xmas.
now everyone knows that to get appointments with various specialists take time. Before I was able to see one, Centrelink had cut me off, I have appealed, and now waiting for the tribunal decision. In the meantime I have evidence from some specialists.
but from the ones that I was gone through the government system to see a specialist in the local hospital, it 5 month for the first appointment, then 2 month to do ct scans and xrays. Now I've been waiting another 2 month hoping to hear from them before coming may which is my tribunal day in May 18. a Doctor called me this morning asking if I have left a message in the hospital about the results of the scans, he said, your scans looking fine, only the liver is fattened, nothing about my debilitating disease or if I'll have another chance to see the specialist so they can advice me about my FMF problems. I'm shattered and so disappointed, he hardly finished talking to me and his beeper was buzzing, he continued saying sorry, I have emergency and was gone. Where am I standing here? What kind of treatment is this, I've been waiting now for at least 7 month to see and talk to specialist and this is what I get. I need a written results for Centrelink and I'm feeling lost. I don't know what to do. This is just a joke. Please help me to understand and get some wisdom here as I'm lost in this government system.
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I am a female 62 years of age who has suffered with FMF since I was a child of 8 years old - but not diagnosed until I was 45 years old. The FMF attacks mimicked several different medical conditions - first I had my appendix taken out at age 8 because of abdominal pains, then at 32 I had a hysterectomy because my "attacks" happened during my monthly menstrual cycle, then the attacks continued and mimicked gall bladder attacks - so I had my gallbladder out! At the age of 45 I was diagnosed with FMF when I made a trip to Israel and visited specialists in this area of expertise to finally get a diagnosis. It was a long time to finally get a medical diagnosis as most of my adult life I was told by doctors that it was stress related and that I should learn how to control the stress in my life!
I was hospitalized each and every month for at least 4 days because of the severity of the attacks and the dehydration of vomiting. Colchicine has kept it a manageable level for me and kept me out of hospital. After 17 years I am now getting side effects of Colchicine of numbness in my hands and feet. Now I have to find another drug that I can use in order to keep the FMF under control.
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For several years I took Simvastatin lowest dose (cut in HALF) and had good cholesterol numbers that satisfied the internist. That doc retired and new internist did a CPK test last year (my first one ever) and found it elevated to 243 so stopped the statin due to fears of muscle damage.
A year later (last week) the retested CPK, after taking NO statin for a year, was 303 and chol. numbers were back up (see below)!! So, doc says go ahead and take atorvastatin because there is a percentage of people who have high CPK with no other apparent problem. He said atorvastatin is more effective re chol. lowering than simvastatin which I'd had years ago. Is that so?
I am female, 64 years old and at age 55 had a calcium scan of the heart which showed ZERO calcium score. This was because I had similar TC numbers to current numbers and one doc (a cardiologist!) said 'have the scan' -- "find out if you need a statin." When he saw the ZERO calcium score for someone 55 he laughed and said I did not need a statin.
Years later, however, this new internist/gerontologist says that's fine but that is just the hardened cholesterol seen in the zero score, not the 'soft,' which is what travels and causes heart attacks and stroke. Great! Money spent for nothing on the test! Guess I need to educate the cardiologist?
My current chol. numbers before re-starting a statin last week were: Total Chol: 251; HDL: 77; LDL: 157; and Trigs: 87. Ratio is 3.26 -- Doc says he does 'not like' the 157 LDL.
So... a week ago I started on atorvastatin at a super low dose (I cut the 10 mg. pills into quarters so 2.5 per day. I have read in multiple places that it's stronger than simvastatin so wanted to start LOW and research shows that 2.5 is often enough to bring numbers to reasonable levels. I am not aiming to have the world's lowest cholesterol.
Last night and today I developed sharp pains in upper mid section and read the 'side effects' -- sure enough -- it's a possibility. Have also experienced increase in heartburn since taking these pills for a week. Started almost immediately. Is there a connection?
NOTE: Gallbladder removed in '04, before ever starting on any statin at all -- I'm one of the many who still has occasional GB related pains, likely from sphincter of oddi problems (sludge or stones formed by liver). It is called SOD III and it's not uncommon and since it's not a frequent occurrence, there is nothing to do about it per gastro doc. I have not had an episode in three+ years until last night/today, though this was mild.
Any relation to start-up of atorvastatin and these pains? Who knows? I would prefer taking NO statins since they are known to raise glucose a little and can bring on Diabetes type 2. My fasting glucose is high normal already at 98 and type II runs in my family at older ages. Swell.
What do YOU experts think of this? Would you be concerned about taking atorvastatin (or switching to simvastatin, which I took with no obvious problems for a few years?) Or would you just say forget the statins and live your life and don't worry about it? There is NO history of heart attack in anyone on either side of my family before age 80 and no 'strokes' at all.
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wanting to contact others who have the same condition. Sometimes it is genetically related or not.
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I had a TIA back in February which was terrifying.
I have been prescribed 20 mg Simvastatin daily but feel dreadful.
I am also taking an SSRI drug for anxiety & am currently unemployed so is this just depression due to circumstances or the drug?
I have been taking the statin for just over two months and am becoming increasingly lethargic, aching all over, headaches and a feeling of just wanting to go to sleep for ever..almost like I have not the energy to care anymore which is an irony as faced with the prospect of dying 2 months ago I was terrified now I don't care. My cholesterol was 5.9 which is not exactly high but in the circumstance I was advised to get it lower with meds. Is anyone else in a similar position?
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Has anyone started taking statins or been offered them because their doctor has told them they have a 10% risk of Cardiovascular disease over the next 10 years? I think people get offered 20mg atorvastatin at this level? What are people's experiences at this level?
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My cholesterol has been high recently and my doctor keeps putting me on statins..it was 300 and I went on Lipitor.. some time after started to have muscle aches so I stopped taking it myself and the pains went away...went to doctor and he put me on pravastatin 20 mg and I tried it for a while but again had muscle aches and pains..i stopped the pravastatin and the pain has been totally gone..i feel great...I need to go to the dr again in about a month but my problem is my doctor won't listen that I don't want a statin..he says a non statin drug won't help..told the dr I don't want to be on statins but he is not listening to me...I have now tried to modify my diet..i weigh about 150..cut out all pasta and sweets...can I really lower my numbers without statins.?
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I have reached LOW triglyceride and LDL cholesterol levels after 6 months of zero-bad-fat diet. I am now ready to ditched my prescribed statins. Is it safe to cold-turkey statins or do I need to wean off?
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I was diagnosed homozygous C282Y in 2001 and have managed my HH successfully since with therapeutic venesection as a regular blood donation. I have to take statins after a recent heart attack and I'm concerned about their detrimental affect on my liver. Does anyone have experience and advice on this issue, please?
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Though I suffer from many complications from liver disease, including diabetes2 (insulin) , my cholesterol is 5.6, with 4.0 and under being the preferred target, by doctors, in diabetics. Few years ago I was prescribed 20mg simvastatin, as the doctor said to me "they are the best thing since sliced bread" !
As I was frightened of the effect of this variety (heard horror stories) I asked for pravastatin instead, I was one them a week, when due to stomach pain etc, I stopped, never was concerned by what my doctor advised...I'd had enough of feeling bad. Nobody has the right to pressurise/frighten you into taking any drug, ultimately the choice is yours. Medics make mistakes!
now that I have diabetes, my diabetic nurse has asked me to try them again, I done this and still got pains and nausea.
she asked my liver specialist at hospital for advice, even he said it would be good to try a smaller dose. I have great respect for my liver specialist and tried (other day) new prescription for 10mg simvastatin, on second day, I got the stomach pains back, worse than before and instead of shoulder pains from them I past. I had bad aching all down my right leg, yes, I have stopped them again already.
I to, like others here, have spent days and hours studying all the evidence on statins, which amounts to real bad news, am now terrified of what long term, let alone short term damage they are capable of! I can't fathom why our doctors keep pushing these dangerous drugs on us, as I cannot believe they could PREVENT heart trouble. As one of the posts here says...your going to die one way or another, so why risk getting there sooner and in pain or great
discomfort.
Not enough medical research has gone into the effects, benefit or otherwise of statins. I feel sure doctors, especially for diabetics, create alarm for patients in for what is normal, good cholesterol, even with slightly raised readings, each patient's reading cannot be the standard ideal, with so many different factors, ie other medication one has to take that maybe conflicts, we cannot modify as in diet, so there answer seems to be force the numbers down by these badly researched drugs.
Because the nature of my particular situation, I doubt this post will be of any help, but it is another's view of this over prescribed disaster.
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