Cholesterol and PBC

[ShellyJane50]

I am wondering if anyone has noticed that there Cholesterol is high since having been diagnosed. Two years ago I was at 155, August this year was 214 and September it jumped to 228.

[Oidra]

My cholesterol has been higher for the last year. My doctor mentioned taking statins but my consultant didn't advise this. As he has kept me fit and active for the last 16 years I am going with this although my doctor wants me to have another liver function test in a month.

[jrobertson1]

Yes. My cholesterol has also risen. Prescribed statin but joint pain became unbearable. PBC nurse seemed to have encountered the rise in other patients and regarded this as normal. Looked at good and bad cholesterol split too and happy that good was higher than bad.

[AdeleMalcolm]

Hi ShellyJane. It does appear to be a feature. My total cholesterol was always under 5.0 (not sure what your measures mean) and that was split pretty evenly between LDL and HDL. When I asked my Dr for a test pre-PBC diagnosis he said unless I'd changed anything in my diet etc there was no point. You can imagine my surprise and horror when I got my cholesterol check done when diagnosed and it'd shot up to 6.8 (split still largely 50:50 though). Here's hoping it improves as I've increased intake of foods found to reduce it. Time will tell! Regards. Adele

[Flowergirl69]

Cholesterol is very high for me too, always around 200. A few years ago I had to start taking statins. Tried several kinds but I couldn't keep on taking them because of serious pains in joints, back,... only after a few weeks of use.

I live in Belgium and it is difficult to get good information here, it seems to be a very rare disease. I'm the only patient my internist knows and he's about 60 years old and has lots of patients.

I'm glad to find some more info here, although I'm struggling with English language sometimes

[Hidden]

Hello ShellyJane50.

My cholesterol was said to be higher than normal pre-diagnosis 2010 (I went to see my GP when I started itching intensely). Apparently the cholesterol was said to be of a good kind and informed it might never be a problem.

I did notice back in 2010 that I did have a bit of yellowy colouring in the corner of each eye to my nose side. But it was said to be cholesterol. I have noticed over time (I started on urso December 2010) that my eyes have gone much whiter than they originally was.

Given bile is responsible for the breaking up of fats I expect if figures in a way that we can have higher cholesterol levels in PBC. I try to limit the amount of fats in my diet even more than pre-2010 (not that I had a diet of much fast food, fry-ups, etc then) and I think that might help more. I have a retired friend who was said to have high cholesterol several years ago. She informed me that her doctor was unreluctant to prescribe statins so she was advised to cut down on fats and see if that helped. She did lose weight that she was carrying over what was considered the norm and her cholesterol at the time did in fact reduce greatly.

[kandiepat]

Hi Shellyjane, yes I have high cholesteral and was never bothered by it as many doctors say cholesteral is good. But while at A&E recently two heart doctors urged me to be on Statins, something I have avoided always. As those two doctors couldnt find what was wrong with me I didnt bother. I asked my liver consultant if I should be on Statins and he said ' why do you want to be?'. However, Ive started taking them this last week and will come off them if I feel any worse than I do normally. Thanks for all your comments, I am intensely interested.

[spoul]

Yes mine was 11 when first diagnosed 17 yrs ago been on statins since...... Now stable around 6ish

[alpha3]

I've recently had a Health check at my G.P.'s and my Cholesterol was 6.7. G.P. suggested starting on a low strength Statin but I said I preferred trying to lower it with diet first. Although I thought I was on quite a low fat diet anyway. She suggested eating more oily fish and using margarine like Benecol etc. So I will give it a go and have a re-check in 6 months time. On the positive side G.P. informed me that my liver test results were the best I'd had since diagnosis over three years ago. Must be doing someting right!!

[chynablue]

Me too! My cholesterol is high, but my doctor said it was not high enough to put me on statins. If I am very, very careful with my diet my cholesterol dips into the normal range, but just barely. The normal range is 100-199, and if I am very careful with my diet I can have about 175. As soon as I come off my diet even a little bit, it jumps back up to about 215-220.

I found that avoiding alcohol, sugar, processed foods, animal fats, etc. combined with eating mostly plants and lean proteins helps keep it in check.

My struggle with cholesterol started about the time I started having PBC/liver symptoms, so I do think they are related.

[nan1012]

It's really important not to just look at the total cholesterol number- if your your good cholesterol is higher than normal, it throws the total high, even though your risk of heart disease may be lower than the total number indicates. Lots of negative side effects to statins.

[Hidden]

Hi Shellyjane, my cholesterol was 11.7 and was put on statins by gp, they continued to regularly when checking my liver function tests . These statins didn't really work so sent to consultant who put me on different statins and told me not to worry too much about . That it was a secondary condition brought on by my liver. I must add that I do not eat prosessed foods as I also am celiac therefore my diet is pretty healthy and balanced. Last check it was 7.4 and he didn't seem concerned so I just keep taking the tablets and living healthy life . My family do have a history of heart attacks and strokes but at this moment in time I'm not too concerned xx

[Djscallan]

Unfortunately that is a problem with the pbc. My jumped from 132 to 300. I take a pancreatic medication called Tricot that brought it down to normal range. Tricot does not have the side effects of the statin meds. Good luck