Cholesterol and statins - what was your level when you started statins?

[Nik2015]

My doctor suggested I go on statins today. My level is 5.7, but has been raise for many years. The highest has been 6.5 last July and has fallen since then.
My blood pressure and general health is fine.

I am very reluctant to take statins as want to try and address my lifestyle first.

Can you please tell me what your cholesterol level was when you first started statins and did they have an immediate effect?

At what level does cholesterol become 'dangerous'?

I read this thread before I went to bed, then really panicked - I haven't been back for a test in 2/3 years and it was 7 then. I've been scared to go back in case they insist on statins! Which sounds pathetic, I know. Family history etc

@vitDsunshine it forms part of an overall risk assessment- lifestyle, family history, the balance between your "good" and "bad" cholesterol, other health conditions.

Ok thanks - I think they deemed my risk very low and didn't put me on statins last time. But I'm going to book another test

I am a HCP who conducts the nhs healthchecks and I am jokingly referred to as 'the statin woman' by my peers because I spend most of my working day talking with patients about cholesterol and statins.

5.7 does not generally indicate FH, if it were 7 or more I would question it.

I have never referred someone to a 'lipid clinic' because they do not exist in my area. We do s the management.

Please don't listen to the horror stories. As with all medications, yes there are risks and possible side effects but have you ever read the list for a simple medication like paracetamol or even Gaviscon?

I was initially put on 80 Atorvastatin (I only weigh 9 stone) and zero side effects, I then dropped to the 40 dose.

Thanks for all the replies, glad to see I’m not the only one and the same situation.

@hashbrownsandwich I think our surgery would just manage it in house. Very interesting that 5.7 doesn’t indicate FH. Would you medicate for this level normally?
TBF my doctor was very good/blunt and said I’d proven I couldn’t sort it myself, but tbh the nurse last time was a bit rubbish and just told me to lose some weight and eat a bag of veg with my dinner….

@Nik2015 my niece’s (recently diagnosed via the cascade testing following my genetic test) level is 5.7. She still has FH.

she is only 23, so I’m not sure if it’s to do with this, or if she just has less of a spelling mistake on her DNA (if that’s possible). Her GP has said statins not needed at the time though. It’s watch and wait.

similarly, my level was always higher than my sisters. Even when we lived together as children, were fed the same and I ate lesser portions in general. Although hers has always registered a bit high.

I was lucky with being given a
specialist, with a real interest in FH.
He organised the DNA testing, I think via the Life centre research unit (Newcastle near where we live). I just had to go to the local hospital and give 5 (larger than average) pots of blood, which they sent to be ‘span out’ on every point on my DNA they knew potentially could indicate FH. He then went through my family treee and wrote to all family members to get their DNA tested, but only on the now known gene.
My boys just did an at-home mouth scrape DNA test and sent it off to be tested.

Nik2015 I have a colleague who wasn't feeling right, she found out she had high blood pressure and cholesterol and was told she really needed to address these problems.

I know it doesn't work for everyone, but she's lost weight and both her blood pressure and cholesterol are back to acceptable levels - she feels so much better healthwise and mentally about her figure. She hasn't gone on a specific diet, but just makes better choices when she can, ie one less roast potato, fruit instead of chocolate biscuit after her lunchtime sandwich, tomato pasta sauce instead of cheese. She struggled to give up crisps, but found Lidl do some pea crisps, lower calories and salt, higher fibre.

8.9 when I started statins, 4 now. About to be investigated for the familial type as I’m not overweight and don’t have a bad diet. Zero side effects from the statins.

@Sleepeazie what was the DNA test please?

@ifonly4 that’s how I feel but without the high blood pressure. Although I’d say it’s normally on the lower side.

4 is great @NutellaNut do you feel any different? Think that the lowest I’ve been is 5.

In fact does anyone feel physically any better on statins? Or is it all under the surface?

@Nik2015 Ive just a checked my NHS app I have the LDL receptor variant.
Dr Pattman, North Tyneside, is my consultant and he sent me for DNA testing. Where, like I say, they span my blood sample out on each DNA receptor where they know FH can occur- in order to pinpoint which gene I have.

They’re also aware that other genes may be involved in FH, that have yet to be identified in medical research, so you can have FH but them not know which gene you have and how it’s effecting your cholesterol.

my FH was initially identified through medical history, family history and age of first high result. I also have never been able w bring it down through diet which was enough for a diagnosis - pre DNA testing.

Have just started statins. Level was 7.4 so I made a few lifestyle changes and the next test it was 9.2 so they reckon it's the familial type. I'm not particularly overweight, eat healthily, drink moderately, have an active lifestyle.

Not happy about taking statins but we'll see what happens. Watching this thread with interest.

Just from curiosity’s sake, is the treatment different if they work out the genetic element? I mean, aside from if you’re already on statins etc.

@MarshaArt Not to my knowledge. I believe it’s used as research for the medical community on the genealogy of FH and the many implicated genes. It’s also a way of finding out who else in the family is affected, even whilst they are still children.
They wont use ‘cholesterol testing’ on children of a certain age to diagnose FH as hormone and puberty make them unreliable.
I’ve been able to categorically find out my boys don’t have FH via the DNA test they had on the gene that I could have passed on.
This testing on a child with FH enables treatment to begin, or records to state it needs to be checked constantly. It could potentially save lives. It also widens their understanding of how it manifests and changes amongst families.

I lost about 8 pounds in weight started walking am almost veggie started Asd a cholesterol drinks. Moved over to light soya milk instead of light almond etc

My blood test was much better the following year so the doctor said I didn't need them. I am loathe to be on more tablets since I already take two meds daily.

Am 59 if this helps. Prior to menopause no issues ref cholesterol
..

That’s really interesting and very helpful, thank you. I actually hadn’t considered that aspect of it for my children.

I would focus on changing your diet first. Lots of tips here
https://joinzoe.com/learn/podcast-foods-to-lower-cholesterol

Mine went down from 6 to 3.5 just by cutting out upf and following a Mediterranean style diet. Time restricted fasting e.g. 16:8 can also help.

That's an impressive reduction. How long did it take?

Mine was 5.3. But I always prefer to avoid any medication which is not absolutely necessary, so opted to go down the lifestyle changes route. I managed to get it down to 3.8 in 3 months.

Those saying they "went the lifestyle route" don't have FH or similar. There is absolutely nothing that will reduce cholesterol enough other than medication for us with a genetic condition. Our lifestyle didn't cause our high cholesterol whereas yours did.

Statins are excellent imo and I've had no side effects on 40mg of Atorvastatin. I've also taken fenofibrate and have benecol etc

One thing no one mentions because it isn't a factor for everyone is smoking- it raises cholesterol considerably- particularly the Trygs and LDL. I know because I did and it dropped a fair bit when I stopped -

When I started Atorvistatin I had a sick feeling in my midriff for about a month.
It did go away. I take my tablets before bed and if I've eaten fresh cream or too much ice cream, once I take the tablets the sick feeling returns.

Got any top tips for us? Please!

@choux first test was last December. Started dietary changes in Jan and retested in June. Also lost 11kg without logging calories and no more sugar cravings.

Problem is IME, those people who say they 'absolulty hate" certain foods in favour of the unhealthy options are rarely willing to put the effort in to lifestyle changes. Sometimes we have to grow up and think of the long term. You get used to stuff you didn't used to like.