Hi there. I am a 37year old female and I have been taking statins for 5years now. GP diagnosed FH around 9years ago. My mum died had heart disease & angina and died after her 3rd heart attack aged 46. When I was 16 my levels were 7.9 by late 20's levels were 9.8. I started taking simvistatin 40mg but after a couple of years stopped taking them due to muscle aches and tiredness. Gp wasn't happy so convinced me to take 20mg instead but now another couple of years on the cramps are 10times worse esp during the night. I suffer with mood swing and anxiety and my sex drive has completely taken a nose dive and my hubby is losing patience!!
Not once in these 5 years has my gp checked my cholesterol since. I am going back there tonight to see him about cramps tiredness and libido and wondered if anyone had any good advice for me. I was wondering if its worth asking to be referred to a lipid clinic as my local hospital has one. This is the first i've heard of this site and thankful to find some support
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Claireabelle
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I agree. Traci is a good example of a woman who has taken herself in hand and followed sensible diet and exercise advice without the statins "hammer". As you have FH there seems to be a "here are the drugs get on with it" attitude with your GP. Get back to him and make him give you a test. Five years is far too long to leave for someone with FH. I would have thought (and here I am only guessing as I don't have FH but there are others on the Forum who do and may agree with this) that a yearly test was a must! Especially as you are on medication (statins) - i would have thought a good GP would monitor your levels yearly as statins are so hit and miss with side effects and could advise you on any changes that could be put in place. Make another appointment for a morning and ask for a starvation cholesterol test so that you can have it done and see how you are doing. Keep us informed. All the best.
Traci is lucky. Some, like me, don't seem to react enough to diet to do without drugs, if you believe the lipid hypothesis.
I think that a yearly test should have been done, to check liver enzymes and so on, for adverse reactions. All for referral to a clinic and see if they'll try other statins. Simvastatin works for me, for now, but other statins did not.
I would push for a referral to a lipid clinic, especially as there is one near. I don't have FH, but shouldn't everyone with it have a yearly check up at least. Also it may have implications for other members of your family. The clinic would also advise you on other drugs you could take.
Hi Claireabelle, Just wanted to give you my support. I am 41 and have FH. I have been on and off statins for 23 years and I totally relate to your symptoms. It is a tough call on which statin to take but with your mum dying so young you need to be vocal and demand seeing a lipid specialist. When I am on Satins I notice a change in me, I feel 20 years older! I believe high doses of CoQ10 100-200mg a day have helped. For me it is a combination, small doses of statin with CoQ10, Plant sterols, Flax seed, healthy diet with low processed food and sugar. Good luck
thank you so much for your replies!! Well I went to GP and he says the statins are obviously causing my muscle aches but as for my restless sleep and libido, he's not sure...it may be my statins, it may be something else.....as I do suffer with stress and anxiousness therefore it may be that causing it!!......I'm doubtful. I asked about other statins and he said that if one statin affects me, then the rest will do pretty much the same. I asked about getting my levels checked (he confirmed they were last done March 2011) and he said "what's the point?".....will knowing your levels make any difference to your decision...?? after that I felt very deflated and not confident enough to ask for a referral. The only referral he was interested in was to Relate for Sexual Counselling!! I don't need sexual counselling, not wrong with our relationship apart from not having the energy or want to have it! He asked me to try some relaxtion techniques to help me sleep better and this in turn will give me more energy, but i'm just at a loss now. He wants me to keep taking the statins as to stop them will only increase my risk.
Last night in bed was a bad night, cramps in my legs, fingers and arms, a constant aching in my bones....but his answer is put up with it, its just a side effect. But what damage are these statins doing inside for us to feel like this??
I am going to try some CoQ10 and see if that helps. I will be back at the surgery soon as my son is having some tests (5years old with an immature bladder) so I think I may ask to see a Locum (I feel more comfortable talking to them rather than my GP) and ask if they will refer me to the Lipids clinic
I am so glad I have found this forum, as my husband doesn't obviously understand the symptoms, worries and concerns
I am searching for something positive to say about your GP, but words are failing me. Sleep disturbances are on the patient leaflet and not all statins affect people in the same way, some people react much better to a different type. This highlights the depths of his/her ignorance and hopefully a more knowledgable GP will refer you. When you feel able do see the locum or another GP in the practice....they do vary in their attitude. Also you mention your son..does your GP know that there is a 50/50 chance of him having it as well, probably not.
words often fail me with my GP!! His favourite quote is "what do you think" while shrugging his shoulders!! He's not a family favourite, he fobbed my father in law off for 6months before referring him, turned out FIL had bladder cancer. We all want to change GP but the practice won't allow us to. If we want to change doctor then we have to change practice but we are ina small village and its not practical to change to a practice so much further away....but maybe I might have to.
No I don't think my GP would even consider that my son has FH. I know though that its 50/50 and i will be having him tested within the next few years.
I am currently researching Dr Beatrice Golomb and I am going to go armed with something in writing for my next visit
just seen your post, well your gp seems very dismisive about your problem.
with your family history he should be taking this more serious than he is. you have to be more assertive. it's your live you cant go on this way. there are lots of statins to try. i have been on two or three different one's. maybe try a different one, nothing to lose good luck.
Hi there
I too think you should be referred to a lipid clinic. As your GP is unhelpful, why not contact the Heart UK helpline for advice on how to approach him/ her and get a referral?
With regards to children, my children were tested for the 1st time at age 10 (I have FcH so even more important if you have FH), and will have blood tests every 2-3 years from now on. Our GP was told to arrange this by the lipid clinic. I have annual checks (sometimes more often if have a blip in my results!).
What a rubbish attitude your gp has, I attend a lipid clinic annually with option to go more often if necessary, I started out with high cholesterol level, put on Sinvastatin which caused awful side effects, muscle cramps etc, gp ran bloods and discovered elevated creatine kinase a result of muscle damage, (I believe these are mentioned in side effects leaflet). Gp immediately changed me onto atorvastatin, cramping stopped and CK levels dropped pretty quickly, cholesterol level stable and near normal! My parents both have high cholesterol and get on fine with sinvastatin, so some tolerate things better than others! Request a referral to lipid clinic, I hope you get sorted and feel better soon.
I have not been online for a week so was appalled when I read your posts Claireabelle.
I was diagnosed with FH at the age of 40 and, as little was known about the condition then, immediately joined the newly formed charity that preceded HEART UK - set up by people with FH for people with raised cholesterol levels. <heartuk.org.uk>. It is my life, my condition and I took charge. If you cannot change your doctor's mind I would change your doctor (or continue to see the locum.)
I highly recommend you contact HEART UK. 1. to give you advice on what other cholesterol reducing drugs may work for you. 2. to give you the NICE Guidelines on treating FH for you to pass on to your GP.
If you can get to Bristol in July to attend their AGM, you will learn so much about your condition that you will be able to take back to your doctor. If you live in Yorkshire we could maybe meet up.
No professional will tell you this but I find that Kyolic tablets from my local Health Food Store kept my levels down until I reached the menopause - with no side effects. You could try this.
Your story matches mine exactly with same side effect. I haven't had sex in so long I can't remember, but my wife is taking hi cholesterol med too so there is no problem there.
about 13 years ago I had a stent put in and my heart Dr. put me on lovastatin. than about two years ago, I had open heart surgery to bypass four more arteries. and than was put on Lipids because I had a couple of embarrassing explosive bowl movements and wanted to change. I don't know if all the problems I am having is due to hi cholesterol med or not but i never had any of your symptoms until I went on the cholesterol med. that is why i quit taking the meds. but do much research and see your dr before doing any thing, this is just my opinion and may not be for everyone.
When I went to GP with it, she said she could just give me what the med journal gives her and what I do with it is up to me. so i cut my dosage in half then just quit.. I feel so much better now.
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He asked me to try some relaxtion techniques to help me sleep better and this in turn will give me more energy, but i'm just at a loss now. He wants me to keep taking the statins as to stop them will only increase my risk.
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