Statins: Wondering if any one has any input on my... - MPN Voice

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Statins

ERei profile image
ERei
20 Replies

Wondering if any one has any input on my situation.My cholesterol levels are pretty high but my cardiac calcium score is zero and MRA is normal.

I've seen 2 cardiologists who both say I don't need a statin because my score is zero however my neurologist says I do because of the high cholesterol. My MPN doc says I should be on a statin to prevent a clot. The 2nd cardiologist I saw said there are no good research studies that show statins prevent clots, only lowers cholesterol.

I'm so confused & don't want to be on a statin if I don't need to. Any thoughts? I'm in my upper 60s and was diagnosed with PV over 3 years ago. Currently on HU every other day. Have had profound anemia twice with normal GI workups.

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ERei
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20 Replies
Otterfield profile image
Otterfield

There is a school of thought now that suggests that total cholesterol level is irrelevant and that triglycerides are a more useful marker. It also matters whether the cholesterol is LDL or HDL. HDL (high density lipoprotein) is a good thing. Statins are controversial - I have read that they do have a protective role, but this may because they reduce inflammation, not because of their effect on cholesterol.

I am only reporting what I have read - I don't have my own medical knowledge!

Amethist profile image
Amethist

I can recommend the book “ Statination ” by Dr Malcolm Kendrick . He explains clearly all you need to know about statins and all the research behind them. Then you can make the decision for yourself based on up to date information.

FG251 profile image
FG251

I’ve read a few studies on statins and came to the conclusion that they’re not merely a cholesterol-reducing drug but a risk-reducing drug - even for people with normal levels of cholesterol. They calm the endothelium and stabilise plaque to make ruptures less likely, reducing the risk of an MI or ischemic stroke. There are apparently lots of other benefits - so-called pleiotropic benefits - which you can research for yourself. Serious muscle problems (rhabdomyolysis) are rare and you could always switch to a less potent one if you experienced any issues. I started on the highest dose of Atorvastatin (80mg) and have dropped through 60mg to 40mg. My LDL is 0.5 and at my last cardiology appt. the consultant said the latest research shows there is no lower limit beyond which very low LDL isn’t safe. In other words, the lower the better. Good luck making a decision. For what it’s worth, I’ve also read that they’re safer than a daily aspirin and are one of the most widely researched drugs. The patents ran out years ago and they cost pennies to prescribe, so ignore the usual conspiratorial rubbish about profits…

PS I’m not a drug rep!

ainslie profile image
ainslie in reply toFG251

Your cardiologist may think that there is no limit on how low your LDL can go but other docs inc hormone docs would say you need cholesterol to make hormones. I am not a doc of course but I would imagine having cholesterol below the bottom of the ref range may have its downsides

FG251 profile image
FG251 in reply toainslie

Yes, that could well be the case, although we never ‘run out’ of cholesterol! As with all these things, one has to weigh the risks and benefits. In my particular case, they’re for secondary prevention, following my MI, so I shan’t drop below 40mg, as per the protocol.

Uzza profile image
Uzza

The medico who diagnosed me with a MPN put me on statins straight away not for cholesterol but to maintain the artery walls. I was in my late 50s at time.

Cheers & good luck.

Uz

Whitegate profile image
Whitegate

10 mg daily Rosuvastatin for 16 years has kept Cholesterol to 3.5 LDL near zero

It was 9 when I started.

FlTodd profile image
FlTodd

I agree with the cardiologists. If you have a zero calcium score this means that you are at low risk for a blockage. Statins come with there own side effects and our not necessary in your case.

ainslie profile image
ainslie

It’s a muddy subject, lots of conflicting views from different experts. One thing that is relevant is the ratio of HDL to LDL , the HDL allegedly takes away the possibly not so good LDL. My LDL has been above the so called range but because my HDL was above average no doc seemed to mind. One strange thing is in the 13 years I have had PV I think they only checked my cholesterol at diagnosis.

havashan profile image
havashan

I agree with the cardiologists and FLTod. I had high cholesterol for years and was reluctant to take a statin for fear of muscle cramps. I finally had a heart scan that showed more plaque build up in one artery than normal for my age. That convinced me to take a statin. I started out with the lowest dose -- .05 mg of Crestar every other day. I started having muscle spasms in my legs almost immediately. So, I cut the pill half (OK with cardiologist) and take that every other day. It has brought my cholesterol into the normal range without any side effects. I would not take a statin if I had a zero score on the heart scan.

KLCTJC profile image
KLCTJC

I just took my dad to the cardiologist due to elevated calcium score. And from what I learned in his visit is they are not worried so much about the calcified cholesterol it is the soft fluffy cholesterol that calcium scans don’t pick up. And he said statins help harden the cholesterol. So, basically what I got from my dad’s visit is you can have a high score and not need intervention and you could score zero and need intervention as the soft stuff doesn’t show up. But the cardiologist said he only looks at two calcium scores, zero and everything else. Just like everything that test isn’t perfect. My mom’s score was zero, and has been on a statin for years. Cardiologist did increase my dad’s Rouvastatin to 20mg and going to do a stress test in another week. My fingers are crossed. My dad is 70, no symptoms, no DM, not overweight and never smoked. I made my parents have that scan because it is an opening for screening because insurance doesn’t allow screening stress tests. Not sure if this helps. But I hope you and all your doctors get on the same page.

Deefen profile image
Deefen

What are your triglycerides? That more important than total cholesterol- ideally they should be under 1

My coronary calcium score is zero and triglycerides are 0.7, which supposedly indicates that cholesterol particle size is big, ‘fluffy’ & harmless as opposed to small, dense and dangerous

I am going to have a proper particle size test to confirm this soon though as, like you, my haematologist is concerned about my supposedly high cholesterol- but my GP thinks I’m fine

ERei profile image
ERei in reply toDeefen

Triglycerides were 124 the last time checked but has been both higher & lower.

Deefen profile image
Deefen in reply toERei

So you’re going by the US scale? 125 is equivalent to 1.4? That isn’t bad, but ideally you should be under 1 - though the Heart Foundation here says under 2 is OK

ERei profile image
ERei in reply toDeefen

Yes, I am here in the US. I have not idea how that works where you are. Here , normal is 0-149

Deefen profile image
Deefen in reply toERei

Yes - a different scale is used in Australia (& the UK too, I think?). My 0.7 equates to about 60 in the US

ERei profile image
ERei in reply toDeefen

That's a good #!

Deefen profile image
Deefen in reply toERei

I put it down to a long-term keto diet

Wyebird profile image
Wyebird

Hi, after suffering a stroke age 50 I was put on aspirin and statins. I didn’t have high cholesterol. So when diagnosed with ET it was just the addition of hu.

My thoughts are regarding taking them what do you have to lose? Better to be safe than sorry.

Do mention high cholesterol when applying for travel insurance. Unfortunately it will increase your premium but it’s a must.

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