familial hypercholesterolemia - Cholesterol Support

Cholesterol Support

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familial hypercholesterolemia


Hi all I hope you are all coping OK with everything that's going on at the moment.

I was doing OK with my cholesterol levels until I stopped smoking and it went from under 5 with no meds to over 6 and a big weight gain so put on meds, I had my routine bloods done and my liver function was of skew, I had another one and my doctor decided I should stop my atorvastatin which I used daily 10mg this was maybe April /May in January my cholesterol was 4.7 nows its 8 and my doctor has referred me to the lipid clinic who have said in a letter to her I have familial hypercholesterolemia, I was under the impression that you had it from birth but mine was always really low, does anyone know if its possible to get it later and if I have it will my children and sibling have it. I'm really concerned about it and they are putting me on another form of stating 5mg 3 days a week

Information and support would be much appreciated, thank you for taking the time to read this

16 Replies

Hi:) I been having high cholesterol since around my early 20’s (6.9) was on simvastatin for months and brought my number down to 4.5 but my body quality of life was ruined (muscle weakness and stiffness and all sorts of prob) then a different doctor ask me to stop taking my med. in my early 30’s i did my blood test and cholesterol was up to 7.5. Took a med again but it was not simvastatin. I realize i also have a lot of fatty liver and i get lethargicness all day long. By the end of the day, decided to stop medication again. I am in my past mid 30’s and feeling better without medication. Generally, my mother and my grandparents have high cholesterol 8.0 and above. But my grandpa never took any medication and he live healthy till 90+years old. Plus i was healthy and had active life when i was diagnosed as high cholesterol.. my life start to become unhealthy after medication was introduced to me. I do not smoke, don’t drink alcohol, have healthy diet and a small eater. My body weight is always either on the Under weight to normal weight.

AlexandriaT in reply to Einz

That's good es as you feel better for restricting the meds, do you still get your test done or don't you bother any more knowing that you have taken the decision to stay off the statins.

Does diet effect yours at all. I have a friend who was diagnosed with extremely high cholesterol 18 and he is allergic to them so just has a healthy diet, I have heard that niacin works but no idea how

Just glad you are OK.

I have been referred to the lipi clinic so will possibly find out more then

You take care of your self and stay safe xx

Einz in reply to AlexandriaT

I always do a yearly blood test including cholesterol reading:) will see how it goes~ maybe try to reply me by mid of August here? Then I will post my number once the result is out:)

AlexandriaT in reply to Einz

Would be interesting to see if its OK thank you x

Einz in reply to AlexandriaT

Just to update, i did my blood test back im august and was 6.9 for cholesterol. Back on Fenofibrate as it won’t give me any side effect so far:)

I am usually on the Thyroid UK Forum where I have been a member since 2011. I have read often that stopping smoking can tip someone into being Hypothyroid. Hence the weight gain. Along with being Hypo you can also experience raised cholesterol. In days gone by and someone had raised cholesterol - they had their thyroids treated !

If you are on medication please go to the chemist to do cholesterol testing.!!

Cholesterol do come down very fast on medication, we humans do need cholesterol for our body to function.!!

I was asked by my GP to wait for 6 months to do blood test but I went to a chemist to do my cholesterol test after 2 weeks and it was down to 2.8 and my body could not handle this very low number.

valeriep in reply to sandybrown

I'm interested in hearing in what way your body couldn't handle low cholesterol, as mine has been as low as 3, but I haven't noticed any side-effects?

sandybrown in reply to valeriep

At that time I was in employment, now I am retired.

I was slow to respond to discussion at meetings, one day after gardening, the next morning I had very bad pain all over my body.!!

The main problem was with my work, it was discussed at my 1 to 1 meeting, slow response to emails and delay with project work.

valeriep in reply to sandybrown

Interesting - thank you.

Rob6868 in reply to sandybrown

That's be you dont need or want low cholesterol

Stop taking statins for cholesterol

You are damaging your body

Your body needs cholesterol and makes its own for a very good reason

Why would you want to lower it

Familial hypocholsterolemia is a genetic disease, if you are in the top 25%tile of cholesterol levels it does not mean you have it! Children who have this genetic condition die young. High cholesterol is not a reliable marker for CVD in fact if you have high cholesterol and are over 60 you are likely to live longer

I have FH and have somehow managed to reach the great age of 65!

That would be great if it's right, my chol was always low but went up after quitting smoking and putting on weight y yes over 60 and struggling with other health issues as well so not a great time but thank you for the replies x

There is a lot of research going on into FH at the moment. My hospital suspected it was causing my own heightened cholesterol (14.5!), which would not come down below 5 on even the highest dosage of statins, and asked if I was interested in genetic testing. This proved that I had inherited a defective gene from my father's side of the family which means that my liver does not process cholesterol properly. I was told that there was a 50% chance of inheriting this gene through the bloodline; my sister and my cousin on my father's side don't appear to have it. Having said that, the hospital told me that so far, they have identified 4 different genes that can cause high cholesterol, so I don't know if they can all be inherited. I was also told that although I should stick to a healthy diet to give my body as much resistance to heart disease as possible, my high cholesterol could only be controlled medically and not through what I ate.

Exercise and Diet Help to reduce it.

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