Help with dangerously high cholesterol (which isn't)

[blackdogatmyheels]

I was put on statins earlier this year, but refused to take them until a couple of months ago, as I was scared.

Before taking statins my numbers were;

Total serum cholesterol 6.4 (a year before was 7.1).

HDL 1.9
LDL 3.6
Cholesterol/HDL ratio 3.4
Triglycerides 2
Serum non HDL 4.5 (was 5.1 a year before)

I was persuaded to take 20mg Atorvastatin.

After a month of taking it my levels were checked again and were as follows;

Total serum cholesterol 4.7
HDL 2
LDL 1.9
Cholesterol/HDL ratio 2.4
Triglycerides 1.8
Serum non HDL 2.7

I had a phone call from the surgery this week, to tell me I now need to take 80mg of Atorvastatin, as my non HDL needs to be below 2.5 as I'm in serious danger of heart attacks or strokes.

I'm really, really confused. My non HDL is the lowest it has EVER been, even when I was younger and physically fitter.

The person was nice, but spoke as if I was an idiot (they talked about 'bad' cholesterol).

I'm 54. When my levels dropped before I started statins, it was due to me really improving my nutrition and fitness. That wasn't enough, so I was forced to take them.

I have physical disabilities. I have an ankle problem, caused by a malunion of the tibia following a spiral fracture. I had a fusion for talonavicular arthritis and I was supposed to have an osteotomy as well. I've been walking with a stick since the surgery, due to more pain and instability. The surgeon wanted to do more surgery, but I discharged myself, as the osteotomy wasn't performed when I was told it would be, and it meant more surgery. I now have a bad knee and hip on the opposite side and my 'bad' leg is several inches smaller than my 'good' one.

I also have MH problems (bipolar, GAD and personality disorders. These and my physical disability has now led to me being unable to leave the house unless someone is with me. I have also slumped into depression, that I cannot shake, so unfortunately, my eating and any energy for exercise has evaporated.

But back to the cholesterol - having looked on BHF site, it appears that my latest lipid results are well within the levels they suggest.

I've been told that my non HDL cholesterol must be under 2.5 and 2.7 is way too high, but according to BHF it should be below 4.

They've agreed to retest in a couple of months, but I'm confused by the conflicting levels that it should be.

The lower number threshold is for people at higher risk, eg heart disease, diabetes, etc. Judging from your surgery’s response it sounds like this is the case for you?

I literally don't know why they're thinking that!

My dad and two siblings have/had diabetes, but my HBA1C was taken at the same time and is fine (and I'm worried that the statins will actually bring on diabetes).

No one in my family has had a stroke or heart attack (my dad had a TIA, but that was when he was in kidney failure and had two primary cancers and didn't affect him badly and I never even told the surgery this).

So no factors that I know. Unless they know something they are not telling me.

Stations are linked with diabetes and dementia

I wd steer well clear.

It is the q.risk that is important as explained in q.risk.org. Don't let them bully you into taking them.

What do you expect mumsnetters to do ? Statins don’t just lower cholesterol btw but if you don’t want to take it, don’t. Presumably you’ve worked out your risk of CVA or MI and are happy to live with that ?
And beware of conspiracy theorists. https://www.alzheimers.org.uk/about-dementia/managing-the-risk-of-dementia/possible-risks-of-dementia/cholesterol

I was just asking advice. I suffer from anxiety so was not sure if I read the information correctly.

What does anyone who asks a question on Mumsnet want?

And to be honest, I thought the latest results, after a few weeks of taking statins, was quite good and not high, so am not happy to go up to 80mg, when I've not even taken them for three months yet.

I am not a dr but your triglycerides have not come down much in those two readings and are borderline high. Are you trying to modify your diet?

www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/triglycerides/art-20048186

My q risk is 5.1% according to them. They've said it's for secondary prevention.

This is best left to the clinicians treating you who presumably have the most recent blood results etc in front of them. Some random says ‘nope don’t take them, dangerous’ you’d believe them and follow their advice rather than that of your GP ?
That’s what I mean.

Secondary prevention apparently relates to someone who has had a cardiac or a stroke!!!

I have never had one, so have no idea what this refers to. It explains why they're acting over bearingly, but it makes zero sense!

OK that makes sense, thank you.

I don't trust the clinicians now they've put it's for secondary prevention and I have never had a primary event in the first place!

I think it means other issues than lipid lowering. Statins are also used to stabilise plaque in blood vessels thus preventing MI or CVA. Ask your GP, maybe it’s an error, who knows ?

I've emailed them. I'm not aware of anything at all. I don't have high BP, I've never had a blood clot and although I've a family history of diabetes (which I'm getting old for as my relatives all got it before the age of 30), I'm actually more worried about the statins inducing diabetes, instead of being preventative.

In fact if I did get diabetes I would definitely stop the statins as they'd have pushed me into it.

Secondary prevention isn't about the prevention of a second event, it's a matter of systematically detecting the early stages of disease and intervening before full symptoms develop – in this case prescribing statins to reduce cholesterol.

You don't have to take medication that's designed to reduce the risk of a heart attack or stroke. But if you do refuse to take it, you then can't complain if you later have problems with cardiovascular disease.

Sorry misread

Nice guidelines say aim for >40% reduction in non HDL, yours has reduced by just 40% which is maybe why? You can say no to them!

I thought this made sense, but actually it doesn't, because if the reason for taking them is only to reduce cholesterol it would be primary, therefore they would only need to get my levels down to normal.

Having high cholesterol is NOT a secondary reason.

What I found was it was just to get the levels below a certain level, which mine now are.

It mentions again taking 80mg for secondary prevention (which having high cholesterol levels with no other factors is not).

Secondary prevention is for patients who already have cardiovascular disease.
Primary prevention is for patients at high risk of cardiovascular disease.
From what the OP writes she should be on statins for primary prevention, therefore her current statin dose is fine. Her GP surgery seem to think she should be on statins for secondary prevention, in which case the recommendation is to lower cholesterol more aggressively, ie an increase in ststin dose.
OP you need to speak to your GP and find out why they have classed you as secondary prevention. Is there something in your medical history that you have not mentioned? A previous TIA for example? If there isn't, then is there something incorrectly recorded on your medical history?

Thank you so much! This was what I was trying to convey

I've never had any stroke, mini or otherwise, no blood clots, no heart problems.

Either it's a mistake or there is something they haven't communicated increasing the risk, I agree you need to discuss it with a GP.

OK then it sounds like they have made a mistake, so I would speak to them to ask why they are trying to treat you as secondary prevention

Statins are notoriously over prescribed.

Thank you everyone, sorry for snippy replies, I was just frustrated that the results were normal according to GP, but I was told today that normal doesn't apply to me and I need to be much lower.

The surgery have asked the GP to investigate.

I think I may know what has triggered this! I searched though years of previous minor problems and there is an entry that is wrong!

30 years ago (so will be on paper records and therefore no one will know the context), I had leg pain. It was thought of as shin splints. But my then GP was worried about claudication.

I was sent to a consultant who conducted several tests, running on machine, sensors, etc.

I had a contrast MRI, which showed my veins were clear there was no narrowing, no plaques, nothing, the veins were healthy.

The GP then realised I was walking funny on my foot and it was linked to my previous leg break.

I've had two other GPs since this.

About 12 years ago I was considered for aspirin therapy due to this erroneous entry, until the GP looked at the written records and realised that I never had claudication.

However it has reappeared on my records as a previous problem just recently again. I know its not true as I've had a CT Scan and MRI in the last year on the same leg.

It's not an active entry, it's in past problems (and says 30 years ago), but it didn't happen, it was thought of, GP referred me and it was ruled out.

It would be the same as being treated as a cancer survivor as I've been referred to a breast clinic for a lump in the past.

I was referred in case it was claudication, I was examined and it was found out I didn't have it.

Why the GP only have this and not the results is worrying, but could explain it. How I can get them to read the damned notes and delete it I don't know.

I would also add that I was chased up last year for missing a diabetes review. I was also given an appointment at the hospital's eye department for a diabetes eye check. I was worried contacted the practice, to be informed it was a mistake!

They also had no idea that I had a blood transfusion when my youngest was born and my uterus was torn and I lost 3.5 litres of blood.

They also didn't have the fact that my uterus tore and I needed an EMCS.

They also can't put this on my records as it's just me saying so and they can't input medical data on my say so.

I've now got my maternity notes from the hospital, so I can prove that my uterus tore, I had an EMCS and received a blood transfusion after losing 3.5 litres of blood.