high cholesterol and have a statin intolerance. What to do?

[goldie]

I have been visiting the Lipid clinic for years, it is always a different registrar and I always need to go through the same scenario. I cannot take any of the statins or ezetimes. I have FH and my cholesterol level at the present time is 11.

My theory is that the statins target where I have Cholesterol build up- my knees, hands, feet and that is why I get such terrible pain if I use statins. The last time I tried within a week I was unable to walk.

I know have visible hard areas of cholesterol, just below my knee and also just above my knuckles on both hands.

I have recently been to the doctor for pins and needles that I am experiencing in both arms and hands(left arm is much worse). They are saying this may be carpel tunnel syndrome. My thinking is it is the Cholesterol blocking blood veins.

I am not saying that I am right, bit I am not getting any positive help and my general health is taking a fast nosedive and I do not know what to do next.

[Aliwally]

I don't know if the other discussion about apheresis at the moment, would be helpful to you. Sounds like it could be another option worth exploring . Maybe you could talk to someone who has been through it.

[goldie]

Thanks, yes anything is a help. I have only just found this site, I am at rock bottom at the moment, so many health problems and I am sure they are all related to my FH cholesterol.

[ElleC]

Hi Goldie,

What is a well recognised syndrome of the fatty deposits (xanthomas) you are experiencing on your tendonous tissue is that it can cause tendonitis. These tend to build up when you have a period of time of poorly controlled cholesterol. I used to have really thickened achilles tendonds and patellar tendons (the ones below your knee) I found that when I started medication initially these hurt more, I guess all the reaction happening as the cholesterol deposits are reducing (again like yours just a theory) but since i've been undergoing intensive cholesterol reducing treatment (i'm a homozygous fh sufferer) these deposits have reduced massively in line with the reduction on my cholesterol and the pain is also massively reduced

I would be concerned about your cholesterol remaining at 11 and you developing these xanthomas. Obviously you cannot tolerate the medication but there are other options for reducing cholesterol, there is a thread on statins at the moment that is discussing this which may be of interest. Like I say though I would be inclined to think that your pain is related to tendonitis because of the cholesterol deposits rather than a function of the statins which tend to cause muscular pain.

Hope this helps?

[suki65 in reply to ElleC]

Hi ElleC

my level was 12.1 2 years ago it is now 6. have you tried intermittent fasting eating within 8 hours a day and no more sometimes i eat between 11am and 7pm but sometimes i eat 12 to 7pm but i have seen great results as statins have messed me up i will never take a statin ever again .and no on listens to you

[goldie]

thank you very very much for your replies< they make more sense than 5 years of lipid/ GP conversations.

[DakCB-UK in reply to goldie]

Either ask to see the same medic next visit or change lipid clinics? If they're getting through medics so quickly that you can't see the same one twice, I'd be wondering why and I can't really think of a good reason for it.

[ElleC]

Traci is right HEART uk would be a good way forward. I am one of their patient ambassadors and I am undergoing apheresis and have been for that past 11 years (I wonder if actually traci was talking about me and didn't realise ;-)).

Anyhow, Goldie, maybe you should get a list together of questions you want to ask your lipid specialist, once they realise you have done your homework you may find them more willing and keen to enter into a full and frank discussion if it is obvious you know your stuff. I think unfortunately they dumb things down so as not to bog us down with info when indeed sometimes that is exactly what you want!

Equally apheresis may well be an option but as traci said is not widely available at current though they certainly seem to be looking to increase availability, this works very well but would not be something to jump into unless all other avenues were exhausted.

[goldie]

Thank you for the good advise.

I attend the UH of Wales and it is always jam packed with patients and usually totally manic! I have never seen the prof that I am supposed to be under only different registrar's. I have met the Lipid nurse once, she gave me some pamphlets and that was it. No one has ever discussed my diet or what exercise I am taking.

My teenage daughter went for blood tests 12 months ago and we have never heard back from the clinic. I asked my GP recently if they have heard anything? and she said," yes, it is probable that she has FH" end of conversation. You will be happy to know after 10 tears I have now changed my GP practice.

[Aliwally]

I thought that Wales was supposed to be much better than England for the cascade testing of relatives for FH.

Could you especially ask to see the nurse next time you go as often they have more time to discuss things with you.

If your teenage daughter does have FH she needs to be seen as well and her treatment options explained. Keep going and asking questions (although I know it's like wading through treacle sometimes.)

[goldie]

thanks